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tv   Politics and Public Policy Today  CSPAN  March 2, 2016 11:00am-1:01pm EST

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can answer accurately, so i won't. >> all right. is there any scientific evidence that unborn babies at this, at a later stage feel pain? and should the knowledge of a baby's ability to feel pain by certain points in development affect the ethics surrounding fetal tissue collection from induced abortion? >> i think the evidence for fetal pain is very strong. and we're seeing good evidence at 18 to 20 weeks of gestation, that fetuses can respond with pain responses. and i think no matter how you feel about a fetus, you know you can accept its humanity, you can reject its humanity. but we wouldn't allow kittens and puppies to be harmed or put to sleep without keeping them out of pain. i don't think we should do that for fetuses, either. >> miss cunningham, did you want to add something to that? >> no, thank you.
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>> well, i appreciate your testimony about unborn children, are the most vulnerable in the human family. and they're deserving of respect and protection. yet you know we see they're destroyed in abortions and either thrown away or traded like a commodity. and it's our duty to protect them, not facilitate the market for their case, my time is expired, mr. chairman, i yield back. and at this point i yield five minutes to ms. degette for questions. >> thank you very much, madam chair. and i want to thank all the members of the panel for coming and presenting your different perspectives, because i think talking about ethics in these situations is important. dr. donovan, i believe you
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testified and i only have five minutes, so yes or no will suffice, most of the time. i believe you testified that you're not a research scientist. is that correct? >> although i have been -- >> yes, or no will work. you're not a research scientist? >> yes. >> thank you. >> and ms. cunningham, you're an ethicist, is that correct? >> yes. >> now dr. donovan, i believe that you are philosophically opposed to abortion, is that correct? >> yes. >> and ms. cunningham, you are also philosophically opposed to abortion, right? >> yes. >> now dr. donovan, do you believe that fetal tissue research should be banned in this country? yes or no? >> it depends on where you get the tissue. no. >> so you don't believe it should be banned. okay. what about you, ms. cunningham? >> i can't give a yes or no answer to that. some should be banned. >> which should be banned? >> that is unethically derived. that uses unethically derived
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tissue. >> tell me which fetal tissue research is ethically derived? >> that which uses fetuses that are donated after an ectopic pregnancy is removed or a miscarriage. >> do you think that fetal tissue research from abortions should be banned? >> in its current practice, yes. >> and dr. donovan, let me, thank you for helping me clarify. do you think fetal tissue from abortions should be banned? >> yes. >> thank you. now dr. donovan, you testified that we have cell lines that have been developed over the last 50 years from fetal tissue research, correct? >> correct. >> do you think, is it your position since those cell lines were developed, from abortion, aborted fetal tissue 50 years ago, that since it was so long ago, it's okay to use that research now? is that what you're trying to tell us? >> in the absence of alternatives, then it can be
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acceptable when it is far removed. >> so because the abortions were a long time ago, it's okay that we use that tissue now, correct? >> it's a little more complex than that. >> i see. okay, now you also testified that well actually i believe it was, yes, it was you who talked about the tuskegee and the mengela experiments. do you make fetal tissue research from abortions equal to those experiments? >> i think that we need to be very careful that we don't do that. >> do you think they're equal, yes or no? >> maybe. >> thank you. now i want to talk to you, miss chara, for a minute. you testified about your view of the ethics of fetal tissue research from abortions. you mentioned the nih panel on human fetal transportation research during the reagan administration, is that correct? >> yes, i believe it was hhs and
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not nih specifically. >> hhs. and in fact that blue ribbon panel unanimously endorsed the position that fetal tissue research is not only ethical, but should proceed, is that correct? >> i believe the vote was 19-0. >> yes, it was unanimous. and the chair of that commission was actually opposed to abortion. is that correct? >> yes. >> and the reason was, as you testified a minute ago, because abortion is legal in this country, and so people thought we should be able to give the opportunity to people who had made that legal choice to have an abortion, to then donate that tissue to help save other lives, is that correct? >> yes. >> because as you testified, the alternative, when somebody chose to have an abortion, if they did not donate that tissue, was that the tissue would be destroyed as medical waste, is that correct? >> yes, it is. >> and that in fact is why many people do make the ethical choice to donate the tissue, is
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that right? >> i believe so. >> now i wanted to ask you one more thing. which is -- from an ethical standpoint, do you think that it makes any difference when cell lines were developed, whether it was 50 years ago or last year? from, from tissue from abortions? >> in this circumstance, i do not think so. because the prospect of research in the future or the existence of research in the past is equally indifferent to the question of whether a woman would decide to have an abortion. that decision is not affected by the research or the prospect of it. >> thank you. thank you very much, madam chair. >> gentlelady yields back. at this time i recognize ms. black for five minutes. >> thank you, madam chair and i want to thank the panelists for being here today. i want to begin by saying that i spent my entire career as a nurse, worked in the emergency room most of that time.
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and it was my responsibility when i was in the emergency room, before we had the organ procurement organizations, to come and talk with the family members. it was my responsibility when someone was deceased, to look them in the eyes and ask them if they would consider donating their family member for research or transplantation. so it's a very sensitive time and i've got to tell you that as i think about those times, i can actually see the eyes of the people that i asked this of. and one of the things that i will always remember is the dignity and the respect for those family members. families actually, there was a report done at the office of inspector general, and if i may insert this into the record that looked at informed consent in tissue donation. what the expectations and the realities were of these family members. and here are the things that were found in there and i don't think it will surprise any of us. because if we have someone we
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love that dies expectedly or unexpectedly, it's a very traumatic thing. what organs will be procured? will the body be treated with respect? and special care to insure that the gift is used for the stated purpose. those are the three main things that were found. in both of this report and also my experiences. very tender times and as i say, a dignity of life and respect for that. i am curious that we don't have that same dignity and respect for the life of what we call tissue and fetus and embryo. this is a baby. we, think miss charro mentioned, these are the remains. tissue is discarded. this is not tissue, this is a baby. you don't get a brain, a liver, a kidney, all of these organs from a tissue. it's a baby, it's not a blob of tissue. what i want to go to is if we could put up an exhibit f.
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in these documents, documents were produced to the panel by a leading university to show that a researcher sought from a tissue procurement business, quote a first-trimester human embryo, preferably around eight and up to ten weeks of gestation. think you all may have that in front of you. but the document is exhibit f. and this is what it looks like. it actually says doctor and we've, the name of the doctor is blacked out. at the university of -- would request a first-trimester human embryo, preferably eight to ten weeks of gestation. we have ordered tissue before, so our information should be on file. please let us know if this tissue is available. this is not dignity. this is not dignity. this is not respect for human life. i want to ask the panelists, have we researched a point in our society where there effectively is an for
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human parts, including sbib babies? and i'd like to ask our panel for their opinion on this email and the notion of obtaining potentially entire embryos on demand. dr. donovan, would you like to address this? >> i personally find that it shocks my conscience and i think it should shock the conscience of the nation. you're absolutely right we have commodity fied the products of conception, meaning babies and baby parts. yes, they are for sale. supposedly just to cover one's costs. but those costs seem to be quite variable. but even if they were given awe way free, it's shocking to be ordering what you want. can i have a boy fetus or a girl fetus? or a brain or a heart or a liver. this is, this is totally in distinction to the honorable transplantation industry that is life-saving and shows great
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respect for the donors. >> ms. cunningham? >> i think what we need to pay attention to here is not, is this somehow increasing abortion. my concern is that researchers have come to count on induced abortion for their research. and one of the articles that i cited in my written testimony shows that they say that liver from induced abortions is widely available and is a promising source. what have we come to where researchers need induced abortion to do their research? wouldn't it have been better if we had banned this at the beginning, and used the creative minds that we have -- to. >> miss cunningham, thank you, i just have one brief comment to make because my time is going to end here in just a second. i believe we should give this same information and dignity to these young women that are making these decisions. and i believe that it should be a more informed and educational
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decision that they're making and i don't believe that is happening currently. i yield back the balance of my time. >> the gentlelady yields back. miss spear, you're recognized for five minutes. >> thank you, madam chair and thank you all for your participation today. you know today i feel like a time traveler. not a member of congress. perhaps we have been transported back to 1692, to the salem witch trials where fanatics persecuted and murdered innocent people who had committed no offenses. or maybe we have been transported back to the red scare, where at least 10,000 americans in many professions around this country lost their livelihoods due to the reckless and disgraceful actions of the house on unamerican activities committee and the infamous senator joseph mccarthy who eventually went after an army general counsel, mr. welch. and mr. welch finally put down senator mccarthy by saying --
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have you no decency? unfortunately, this time those being burned at the stakes are our scientists. who hold future medical breakthroughs in their hands. they are joined by brave women's health care providers who are simply trying to care for their patients. meanwhile, david delyden and his associate, sandra merit fraudulently created the center for medical progress, and they were indicted in texas, by a grand jury, for actual illegal activities. they are the reason why we are here today. illegal conduct by two people, they have now been indicted. and that's been the creation of this committee. and i have here a poster that shows what they've been indicted for. they've been indicted for two felonies, for tampering with government records.
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in california, they are being investigated for any number of felonies, including misrepresentation of one's company to the irs. felonies for fraud in creating fake driver's licenses and credit card fraud identity. and a judge in california has made this statement in granting a motion for preliminary injunction by saying -- defendants engaged in repeated instances of fraud, including the manufacture of fake documents, the creation and registration with the state of california of a fake company and repeated false statements. in order to infiltrate and implement their human capital project. the product of that project achieved in large part from infill ration, thus far have not
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been pieces of journalistic integrity, but misleading, edited videos and unfounded assertions. so my question to you, dr. donovan, is this -- you're an expert on ethics, as is ms. cunningham and ms. charro, do you think it is appropriate to conduct one's self in that manner? is that ethical? is that moral? i didn yes or no? >> most ethical and moral questions are not yes or no questions. >> we've been asking yes or no questions this morning. >> i've noticed that. it doesn't always help one unpeel the onion in order to get to the truth. so if you want a yes or no, i'm not quite sure how to answer that as a yes and no. you know where is the greater damage? i'm not an expert on journalistic ethics and i'm
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certainly not an expert on the law. i am glad that -- >> well -- >> the preparing of false driver's licenses isn't a felony, or many college students would end up in jail. >> do you think committing fraud is ethical? >> of course, fraud is not ethical. neither is what was being investigated. >> ms. cunning harjs is committing fraud ethical? >> as a broad statement, one would say it's not ethical but i'm not answering the specific question about the conduct of mr. delyden. >> you think mr. delyden is ethical? >> i can't answer it in the way that you're asking. >> professor charro? >> i think the attempt to deliberately create distorted videos for political purpose and to tarnish and organization that helps millions of women was profoundly unethical and destructive. >> i thank you and i yield back.
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>> gentlelady yields back, at this time, dr. buchon you're recognized for five minutes. >> i was a practicing cardiovascular and thoracic surgeon for 15 years, prior to coming to congress and i also want to say it's totally appropriate to re-evaluate and examine ethical issues that have been examined in the past. times do change. and so i know some of the narrative has been that in the past people have looked at these issues and come to conclusions. but in health care particularly, i think it's important that we occasionally reexamine these issues. the other thing is based on some of the comments of my, the democratic colleagues, i'm not sure what everyone is so afraid of. because this type of discussion about ethics is totally appropriate. and we're not, we don't have a preconceived outcome. and i would also just remind everybody in the crowd that charges and indictments don't mean convictions and guilt.
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so with that, i would like to go to exhibit b-1. and go over some emails in the first and you may have those. in the first the customer, this is between a tissue technician and a customer. i'm going to walk you through this. we're now ready to include the skull so if you would please include that in our order for tomorrow. that would be great. if there's a case tomorrow, could you please have someone contact me with a condition of both the long bones and the calavarium which is the head and i will be happy to let you know if we would like one or both. four minutes later the technician responds, i would be happy to do that. exhibit b-2. the customer replied a day later, just want to check in and see if there were any cases within our gestational range for today, the technician responded four minutes later. there is one case currently in the room. i will let you know how the limbs and calivarium look to see
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if they're able to take them. which means they're discussing actively during the abortion itself. >> three minutes later the client said great, thank you so much. exhibit b-3, after the abortion is performed, the technician tells the customer, the calivarium, the head is mostly intact with a tear up the back suture line but all pieces look to be there. the limbs, one upper and one lower are totally intact which the upper arm broken is at the humorous please let me know if they're acceptable, i'll set them aside. >> five minutes later the customer replies that sounds great. we'd like both of them. please send them our way. thanks again. the technician says limbs and calivarum will be there at 3:30 to 4:00. and we'll hear later in testimony and there's evidence to show the technicians are partially paid by the number of body parts that they could get. so given that, do these emails
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raise any ethical issues? and if so, what are they? >> dr. donovan? >> once again, i think that what we are seeing is a total lack of respect for the dignity of the human body in this case. because as we've already pointed out, not only are these humans, but these are human body parts. otherwise no one would be interested in them. but to order them, you know, piece by piece, like you would order a mcdonald's hamburger, i find discouraging and shocking. >> ms. cunningham? >>-day find a number of serious ethical problems. unbeing apart from the question of abortion itself, i think it completely fails to isolate abortion from the decision about the fetal tissue and consent to use the fetal tissue. in what we see here, there's no indication of consent prior to this procedure or for these specific parts to be excised.
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>> in fairness, that could have occurred earlier, i guess. >> i said there's nothing here to indicate that. >> ms. charro? >> i would just like to add a little bit of context, because exactly the same kind of language would be used if we were talking about people ordering tissue from adults who had died. and we're now having their bodies used for tissue and organ recovery. it's the same kind of clinical, dispassionate language that is deeply upsetting to many of us who are not in that world and are not familiar with that. as you as a physician have said, there's a world of difference in how we talk about things. and there is -- >> i appreciate that. and. >> and there's a world of tissue transplantation and tissue research with adult tissue that's out there and enormous and is very little different from what we're seeing here. a little context about how this all works. >> as a physician, during my training i spent a lot of time on transplantation talking to
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recipients and also family members of people who were in an unfortunate situation, making on behalf of their loved one to donate organs. you know i think that, talking about a human being with you know, like this, the mere fact that the arm was broke and the leg was broke and they're talking about the head separately, of a human being is something to me that, that's pretty hard to take as a physician. i yield back. >> the gentleman yields back, ms. delbine, you're recognized for five minutes of questions. >> thank you madam chair and thank you to all of witnesses being with us today. i'd like to start by disspelling any misconceptions and this commit i's participation. it's not objective and or impartial in any way. this taxpayer committee was created by republicans more than four months ago after a group of anti-choice extremists made a series of false, unsubstantiated
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allegations about planned parenthood. since that time, four different congressional committees and a grand jury tried and failed to uncover any evidence of wrongdoing. and their anti-choice accusers have been indicted on felony charges. meanwhile, the majority has deliberately ignored this growing body of evidence and has clearly decided to continue spending taxpayer dollars to attack women's health and intimidate health care providers across the country. now in the committee's first hearing, the majority would like our constituents to believe we're conducting an objective hearing on medical research. and that couldn't be further from the truth. what we're really doing is reopening a long-settled debate about research to further broader political agenda. against a woman's right to choose. and if their attacks on science succeed, we'll all pay the price. because nearly every american has benefitted from research conducted with fetal tissue. how how we developed the
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first-ever polio vaccines, it's how we make vaccines for rubella, chicken pox and shingles an it's how scientists are pursuing new treatments for heartbreaking diseases like alzheimer's and hiv and it's done with compliance with president reagan's blue ribbon panel in 1998 passed by congress with broad bipartisan support. as someone i started my career doing medical research. and i know that research using all human tissue is subject to ethical and legal standards. professor charro, do you agree with that? >> i do. >> and professor, do you think it's appropriate to use ideology about women's rights to shape the rules that guide scientific research? and why or why not? >> no. i'm very, very unhappy at seeing a debate around abortion turn into a debate around scientific
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research. that's not to say i'm happy about the debate about abortion, either. because i also find it really offensive to imagine that women are incapable of making their own decisions about whether to have an abortion and whether or not to donate the tissue. but for sure, while that is going on, scientific research ought not be halted or hindered simply as an attempt to demonstrate one's opposition to abortion rights. in either a political or public relations manner. it doesn't change anything. and i don't think that the public should be made a victim of those abortion wars. >> can you speak a little bit about the role of institutional review boards in providing oversight on the use of human tissue in research? how do they help insure that research is compliant with ethical and legal standards? >> so like dr. donovan, i've been a member of an institutional review board, off and on, for many years. and those boards look at a
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variety of things starting how it is that people are first approached and asked about whether or not they'd like to participate in research or in this case, to donate materials. it looks at the nature of the conversation that will be had. the documentation, because of course what's on paper is not the extent of the conversation. it's simply the minimum number of items that might need to be documented as far as the consent form goes. it looks at whether or not in the end there has been compliance. there are often research monitors that will observe certain number of interactions in order to insure compliance, there's an annual review that is required for each research protocol. and sometimes reviews are done more frequently depending upon the protocol. the institutional review board is made up of a variety of people from both scientific and clinical. and nonmedical back grounds. including law, ethics, religious studies and members of the community who can reflect the local community culture in those discussions. >> and that has been something that also, the blue ribbon
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commission looked at and made sure that those boards were appropriate and that was part of that, that debate that they had and the decision they had from the commission? >> yes, institutional review boards are actually required by law. it begins with the use of federal funds that will trigger such a requirement or the research into things that are regulated by the food and drug administration. but most major research institutions now have extended that review beyond the legal requirements in order to give what is called a federal wide assurance of all research at that institution complying with the same rules, even where not legally necessary. >> thank you so much, i yield back, madam chair. >> dr. harris, you're recognized, five minutes. >> thank you very much. you know i am a physician, i was a physiology researcher, i did fetal research, but it was fetal sheep, cerebral blood flow and i was a human principal investigator who had to file irb
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applications, i don't intend do litigate the use of fetal tissue, i suspect we all agree about this. dr. donovan, ms. kungingham. when you said the question about fetal tissue, i assume you support fetal tissue research from spontaneously aborted fetuses. >> correct. >> let's all agree this is not litigating fetal tissue research. we all agree it should be done. now dr. donovan, let me just say i was fascinated by you're -- what we're talking about here is consent and whether irb consent and patient consent, whether it's all adequate. and the idea that when you're a guardian of someone, that you are qualified to give consent because you have the global best interest of that person in mind has to be brought into question. when it's an elective abortion. it has to be. and with regards to the millions of people saved by you know, by fetal tissue research, we're all talk being about the vaccines, two cell lines. one cell line, interesting, a female child, aborted because the family was too big.
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i would proffer that that mother, that if you gave that child the, and that child could somehow give consent, they would never consent to that abortion. the second one is a mail male which was aborted for quote psychiatric reasons. when i have to give irb approval on a patient. i have to be careful about approaching a patient with psychiatric illness. a lot of people feel they don't have the ability to give consent. it was a very good point you made. let me just talk a little bit about an irb question specifically for you, dr. donovan. is the source of fetal tissue or how it is acquired, a valid question that an irb should have answered before they approve a project? >> it's not only a valid question. it is asked and has to be answered, some institution was absolutely forbid its use. >> if there were an instance where the application was, let's say massaged a little bit so it was a little unclear what the source was, in an attempt to
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bypass that, that would, that would really bypass the intention of an irb? is that right? if for instance you didn't call it exactly what it was or what, you what could be readily identified as the source. >> you clearly know what you're talking about. and in fact, would that occur. the investigator would be in trouble with the irb. they would be called in and questioned about it. >> sure. let's put up, look at exhibit a-3, which is commonly used form for fetal tissue donation. that was uncover through discovery by the committee. ms. cunningham, when i had to gto get consent from patients, we obtained human tissue from a cesarean section. we normally described the tissue and really kind of exactly described what it was going for. it could be global it could be okay, it's to study in this case it was to study uterine myocytes
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and their effect on preterm labor. do you find anywhere on that form, i'll tell you, i don't see anywhere where it asks specifically what tissue it is. in the case brought up by dr. buchon. i assume that that abortion, they didn't go to the mother before and say oh, by the way we're going to collect an arm and a leg and we're going to do it for this kind of research. is that something you think part of informed consent ought to be? that you actually know the where this tissue is going and for what? >> yes i'm not the only one. if you look at elements of fetal tissue donation consent in other contexts it's quite specific on what is being discussed with the prospective donor or their family. >> absolutely. ms. charro? >> the point from the gentlelady from tennessee, my wife passed away a year and a half ago, i got a call from the medical
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examiner's office requesting donation of her brain. it's a tough call. but it was specified one tissue, and they specified what was going to be done with it now you look at exhibit a-3. anden then you look at exhibit c-1 and c-2, which are what various anatomical donation forms used by states. it's strikingly different. strikingly different. do you think that it really ought to be included, when you ask someone, a woman, to donate the fetal tissue, that you perhaps suggest specifically what it's going for and what the specific tissues to be used are going to be? if the person knows or should they make a best effort to know? >> i'm not sure. >> thank you very much, i yield back. >> the gentleman yields back. ms. watson-coleman, you are
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recognized for five minutes for questioning. >> thank you, madam chairman, i have a question for dr. donovan and for ms. cunningham and i would appreciate yes or no. i need to understand are you suggesting that it is more moral and more ethical to discard fetal tissue that is available, even after an abortion, that a woman decided to have. rather than use it for medical research purposes? is that a yes or a no? >> that's not a yes or a no. >> is that a yes or a no? do you believe that let me ask you it this way. do you believe that fetal tissue that has been derived from a woman's decision do abort should be used for medical purposes or not? is that a yes or a no, sir? >> that's not a yes or no question. >> ms. cunningham, do you agree or disagree, that fetal tissue
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is available as a result of a woman deciding to have an abortion should be used or discarded? used for medical research purposes or discarded? >> i'm sorry, what am i -- >> what is it that you all don't understand? >> would you like an answer to your question. >> yes or no used or discarded? >> used for medical research purposes. or discarded. and not used for any purpose. eliminated, trashed, thrown away. as opposed to used for medical research purposes. to find whether or not a cure can be found for zika, a cure can be found for some other disease. do you believe that it is moral to discard that tissue rather than use it. is that a clear enough question? >> thank you. because i'm under oath, i cannot answer yes or no question.
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what i can say is that it is currently being practiced. i do not believe it is ethically possible to do so. >> dr. charro, may i please have your sort of sense of what you just heard from both of these individuals. with regard to the use or the discarding of fetal tissue that is a result of a woman's decision to have an abortion. >> i will stand corrected because i am speaking for other people, but i think i heard that they are uncomfortable with both outcomes. but given only those two choices, they would discard rather than use for fetal tissue for a variety of reasons having to do with why they oppose fetal tissue research. but i have to say, i have to yield to you, to explain what it is that you actually meant to say. >> thank you. >> well i wouldn't mind hering that, if you could say it succinctly. because i do have a number of questions. >> i'm as succinct as i can be. you asked one of the most
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complex ethical questions. what do we do with the information or products of medical research when we think the research itself is tainted. >> that's not what i asked. >> that is what you asked. >> no, sir, i know what i asked. i you asked do you think it is better to discard the tissue that would result from an abortion that a woman made a decision to abort, as opposed to a spontaneous abortion, an ectopic pregnancy aborted. do you think it is moral to throw it away rather than use it for purposes of discovering cures, discovering treatments, et cetera? you can give me a yes or no. i'll take it if not, i'll move on. >> few moral questions are yes or no questions that one certainly is not. >> thank you very much. professor charro, we've heard what's happened as a result of those videos that have been released. we know what has happened with regard to delyden and those
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videos, we know it's created harassment and fear and what-not. as a matter of fact. the dean of the school of medicine at your school. they use fetal tissue for research and he's been compared to war criminals. does surprise you that researchers have come under attack and that health care providers and doctors also were under attack? and could you give me a close yes or no? >> it does not surprise me. >> and what do you feel about that comparison? >> thank you for giving me the opportunity to say something i've wanted very much to say. my family was personally touched by the holocaust. i lost a grandparent in the camps. i grew up in a neighborhood where people wore tattoos on their arms that represented the years in the camps. these were people who were alive and were aware and were suffering for the years that they were in those camps. i am profoundly, profoundly distressed and frankly offended at the thought of comparing that to the experience of laws on
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embryos or feet us. >> madam chair, 30 seconds? >> thank you very much. because i simply wanted to say madam chair, that we believe your efforts to compile this database of names is very dangerous, we believe that linking people to this investigation is very dangerous. and we think that characterization of unlawful sale of body, baby body parts is very dangerous. and we're disappointed that republicans tabled our motion and that you would not answer mr. nadler's question when he asked you why you thought it was important. >> the gentlelady's time has expired, at this point i recognize ms. hartsler for five minutes. >> thank you, madam chairman. i would say based on the comments that that were just made, just a reminder that babies who are aborted are normally buried or cremated. it is not discarded.
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and so to follow this premise, you would be saying to bury a loved one, rather than donating to science is immoral. and i clearly, clearly reject that we have to treat these babies, with the dignity that they deserve. and i think the logic is flawed to say just because you don't donate a loved one to science, it's immoral. but i want to talk a little bit about the consent. i was a former teacher for many years, working with teenagers, some that had time in their life when they this an unexpected pregnancy. and these are very difficult issues. so i would like to put up exhibit e, excuse me, start with exhibit d. and say this question will start off with dr., mrs. cunningham, the secretary of hhs issued the belmont report which says that consent is valid only if
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voluntarily given. and that quote inducements that would ordinarily be acceptable, may become undue influences. if the subject is especially vulnerable. so if you could put up exhibit a-3. the consent form that is used in some of these clinics. i would like to ask you, in your view, does this form violate our government's own guidance in its inducement to women considering abortion. especially with the promise and the statement in the very first opening of the consent form says research using the blood from pregnant women and tissue that's been aborted has been used to treat and find a cure for such diseases as diabetes, parkins parkinson's disease, alzheimer's disease, cancer and aids. i would say i lost my mother last year with alzheimers, i'm not aware that there's a cure
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out there. this was news to me. mrs. cunningham, do you think that this consent form complies with hh s's mandate against inducement? >> it would be interesting to know from the women's perspective if this does induce her to sign the form. this idea of the promise of cures. which is a very powerful motivator. the concern i have is that the standards that we have typically for fetal tissue donation are just absent here. so in addition to the volunteerness, there's the thoroughness of the consent seems to be missing in this form. >> i would concur with the hhs-informed consent checklist itself that's online. a couple of their requirements, there's supposed to be of consent. a statement describing the extent to any of which confidentiality of records the subject will be maintained. i see no such statement in this exhibit. it also says, research rights of
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injury and explanation of whom to contact for answers to pertinent questions about the research. research subjects' rights. if i was a teenaged girl in a crisis situation, there being presented with this form, i don't see it there. do you see it on the form? >> i do not. >> okay. ms. charro, last august speaking about fetal tissue research while at a naral conference, were you quoted as saying, now remember this is not about using an actual embryo or actual fetus, this is leftover tissue after the fetus is long dead. please put up exhibit e. in this email, the tissue procurement manager of a tissue business described to a university researcher, the immediacy of obtaining tissue from aborted fetuses. the manager wrote that after the doctor determines the abortion is complete, the procurement technician is allowed to begin procurement. this takes a couple of minutes. so given these comments from the tissue procurer, how can you contend that tissue procurement
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occurs quote after the fetus is long dead? >> i don't recall speaking at a naral conference last august, but there was a conference i spoke at considerably longer ago. speaking of length of time and i believe that that comment was being made in the context of the cell lines, which are from fetuses that were aborted a long time ago. but i don't have a transcript of my remarks with me, thank you. >> dr. donovan isn't the tissue harvested immediately after the cells -- aren't the cells still alive? >> absolutely. they want fresh cells. >> i yield back. thank you. >> gentlelady yields back, mr. nadler, you're recognized, five minutes for questions. >> thank you, madam chair. ms. charro, i first say that i find most of this discussion irrelevant. because it relates to the morality of abortion. opinions differ obviously on the morality of abortion, i think abortions are perfectly moral.
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but that's not the question. abortion is legal and is a consequence safe for women in this country. the law already prohibits initiating a pregnancy for purpose of donating tissue. a hypothetical concern is we've never heard of this actually happening. the question before us is about fetal tissue research. but if the abortion was going to happen anyway -- now mr. harris, or dr. harris pointed out, dr. donovan agreed that we all agree that fetal tissue research is valuable. but in a disagreement may be over the source. but if the abortion was going to happen anyway, even if you don't like that fact, how can it be immoral to save lives by use of fetal tissue from an abortion that would have happened anyway, tissue that would otherwise be thrown away? what makes the use to save lives instead of throwing it away, immoral, ms. charro? >> there's been a great deal of
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conversation about the notion of complicity with an underlying act one considers to be immoral. at this point i think it's helpful to take an example of an act that i think is universally understood to be immoral and not one that is debated, which is the case of abortion. if we talk about the murder of an adult, which we all consider to be immoral. and is also a criminal act, not legal. there's no question that we use those tissues and organs from murder victims for organ transplantation, for tissue transplantation and for organ and tissue research. without in any sense feeling complicit. we don't encourage murder by virtue of using those tissues. we may not condone it. but we certainly don't view it as something that should be abandoned because we don't want any connection with an underlying act of which we disapprove. so i find the arguments about complicity to be unpersuasive. >> by the same logic, whether you think abortion is immoral or not, use of fetal tissue that would be there in any event, for moral purposes, is no more moral
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or immoral than use of tissues from a murder victim? >> that was the reasoning of the panel that was led by judge adams for president reagan. and that is a kind of reasoning that does not appear to have been affected by events in the last 30 or 40 years. science changes, but that particular analysis seems to remain persistent. >> let me quote from ms. cunningham's testimony. she said it is, and this is a subquote of a book by robert george and christopher tolleson. it is immoral to engage in research for any purpose that involves in destruction of human beings at any stage of their lives, including the embryo, or any condition which is dependant. ms. cunningham continues, those responsible for terminating the life of a fetus have failed to recognize the fundamental principal of human dignity and have no moral claim to assign the body parts or tissues to other people.
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regardless of the nobility of purpose. in other words, ms. cunningham. dr. donovan. mr. george that wrote the article believe they have a superior moral claim do that of the mother to make this decision. i find this incredibly arrogant. because of their view of the morality of abortion. they would deprive the mother of her moral agency. having decided to have an abortion, which is her right under the law, which some of us regard as moral and some people regard as immoral. but it's her decision, under the law. would deprive her therefore of the right to make a decision to use the fetal tissue that would otherwise be thrown out for morally good purposes to help save lives. and they would deprive the mother of this moral right. because they have a superior moral right. would you comment on that, ms. charro? >> yes, this was exactly the concern that was raised again, and again by the reagan panel which did a fairly thorough report on a lot of these things. and they looked specifically at
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whether there's anybody else who is in a superior position to give consent. that could be scientists, it could be physicians. it could be that the material is used without any kind of consent at all and considered abandoned property. in the end, they concluded that there was no one, and no entity and no rule of law that had superior entitlement to make this decision than the woman herself. >> i have one final question. dr. buchon noted that it is legitimate to reexamine these issues, we have panels a couple of decades ago, we can reexamine the issues, he's right of course on that. we can always reexamine the issue. he said what are we afraid of? here's what we're afraid of. we also know that an employee at one of the entities of the chair has subpoenaed, someone who is identified and connected with the false videos has been the victim of a death threat posted online suggesting that he or she should be hung by the neck using piano wire and propped up on the
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lawn in the front of the building with a note attached unquote. that's what we're afraid of. that this kind of proceeding that we're doing, with the kinds of obnoxious and illegal and frankly, subpoena is think designed to endanger the lives of people who engage in abortions, that's the danger. ms. charro, would you comment on that? that's my last question. >> it's a documented danger, we also saw as was noted earlier on the deaths in colorado immediately following some of these tapes being released. i can say from personal experience, not related to this topic but other topics i've written on i've received threatening calls. and it is incredibly deserving and it is a way to intimidate and chill research in the united states. >> and make this existy complicit in these acts if they occur. >> the gentleman's time is expired. ms. love, for five minutes. >> across the united states,
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current federal law prohibits minors under the age of 18 from serving in the military, entering into financially binding contracts, purchasing nicotine, being purchasing nicotine, being tried as an adult, getting married or voting. we have a number of laws in place that protect our minors, this includes prohibiting minor to go into certain movies without a guardian or a parent being around. and all of this is to protect that minor because their brains are not fully developed and they lack the ability to fully comprehend long term repercussions of their decisions. so my question, ms. cunningham, do you think that ethical guidelines should be in place to protect a minor when they're giving consent to a clinic to perform an abortion and what kind of guidelines do you think should be in place? >> are you thinking about the abortion procedure itself or the specific issue of consent to donate? >> i'm talking about -- i'm not
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talking about tissue donation. i'm talking about when they're going in and actually giving consent to even have an abortion performed. >> well i think first of all there should be great care exercised because as the united kingdom, human fetal tissue authority noted that the time of abortion is an emotional stressful time for a woman. and i have been in a number of conversations with fens involving informed consent and it is really helpful to have the second person there taking notes and paying attention to what was said. my own husband didn't remember what the oncologist said to him but i took notes and was able to help him go through the informed consent process. great care would need to be taken in any form of consent proceeding, especially with a minor. >> with all of this being said, do you think it's important for us to have different consent forms for minors versus adults? >> well, in fact in medical
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research children cannot give consent. they're allowed to give what we refer to as assent but they also require the permission of the parent involved as well. >> okay. given what we know today with current laws governing consent for minors, what do you think would be an appropriate age for someone to get an adult consent form as opposed to a minor that is giving consent for an abortion. >> in research under the law at 18 they can start signing a consent form. although human development specialists suggest that maybe sometime around the age of 24. teenagers actually do grow up. >> i want to actually concentrate a little bit now on the tissue donation. i have a 14-year-old child. i am not a physician. my expertise is in real life, in the real-life aspect. i have this 14-year-old who is a straight a student and makes
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decisions, great decisions generally most of the time. and under normal circumstances i actually asked her to look at this exhibit and try and figure out whether she can fill that form out. my very smart child kept coming back to me asking for explanation, clarification. those are under normal circumstances. so let me ask you this question. what kind of emotional duress do you think a minor is under in anticipation of an abortion procedure? just your thoughts. i mean i can imagine -- >> i'm sorry. >> -- what i would go through. either one, ms. cunningham, this is a great question for you. what kind of duress do you think a minor would be under before having to go under -- having to have a procedure, an invasive procedure like an abortion? >> having raised a daughter who has survived adolescent but who has been with her in physician consultatio
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consultations, there is stress dealing with a sprained arm. this tl is great stress after going through an x-ray after she fainted. there must be even greater stress in an event that shae may be wishing to conceal with others. >> so imagine that 14-year-old, going into a clinic to undergo a very invasive procedure without someone there that she trust to walk her through to make sure she's not being taken advantage of, to make sure she's making the right decision. how can anyone be sure that that minor under difficult circumstances fully understand the long term repercussions behind their decision when the current law wouldn't even allow that minor to get behind the wheel of a vehicle? >> you're pointing out a real discrepancy between the way we deal with the teenagers in our country. i wouldn't be able to take that child and do a procedure on them without the mother or far being there and giving their on sent as well. if i did that would be assault and battery. >> thank you.
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>> gentle lady yields back. mr. duffy you're recognized for five minute. >> thank you, madam chair. welcome panel. i want to be clear on your testimony. that is that there's a -- i think you said there's a compelling public interest in research on fetal tissue is that right? >> yes, i said that. >> and this is about saving lives, correct? >> that is what i said. >> okay. now i think i heard you correctly when the chair asked you in the first round of questions about whether there's any ethical violations in regard to using fetal tissues thr taste tests, cosmetics or human and animal dna testing. and i think mr. donovan and ms. cunningham expressed concern but you did not. so could you explain to me the compelling public interest and the life-saving resync that takes place when we use fetal tissue for taste tests and cosmetics? >> first i'm referring to the
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full range of uses which includes all of the basic science and research -- >> i'm going to reclaim my time. this is very specific. >> the question was whether i thought there was a compelling public interest and i'm talking about the full range. >> the question came specifically from the chair about taste tests and cosmetics and dna or human an animal dna testing and you didn't express any concern. so do you have a compelling public interest that saves lives in regard to taste tests and cosmetic research using fetal tissue were yes or no? >> i can't say yes or no because that's not actually what i said. i did not express no concern. i said those -- >> is there -- >> are probably more frivolous but they're among the many uses for tissues. >> do you think there's a compelling public interest in saving lives if we use fetal tissue for taste tests and cosmetic? >> fsh taste tests there might be because it actually, the loss
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of taste neurologically can lead to devastating problems. >> how about cosmetics? >> depends on which cosmetic you're talking about. >> is there any research that you think is inappropriate using fetal tissue. >> using any tissue, i find the cosmetic uses in hollywood to be frivolous and i would be happy to see us abandon them. >> you're advocating on the behalf of fetal tissue research and stem cells. you've consulted for companies involved in those activities and the cv you provided in 2002 you were the scientific -- you were the scientific advisory board of wisl and in their website it shows that it does stem cell research. in 2012 you were a consultant to cleveland biolabs, and in their filings cleveland biolabs says
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it uses proprietary stem cell lines in its products np in 2006 you were a consultant to stem cells ink. it uses, quote, human neurorale stem cells, receiving fetal tissue supplied by stem cell inc. you have a vested interest on the boards reason correct? >> i receive no funding from wcel wc wcel. those were not embryonic stem cells. >> you do have a financial interest in. >> not at present, no. >> but you have in the past. >> i have. every dollar of that was donated. you can lock at my irs tax returns. >> i want to go to a few other issues. if we can g to exhibit a-1. if we have one who works for a
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tissue procurement business and they're corresponding with an abortion clinic technician and they're providing a wish list of items that they're going to want to purchase, things like liver, thalamus, skin, to be shipped by fedex overnight whether to harvard or u mass, you have a shopping list being sent from the tissue provider to the abortion technician. and if we could also go to exhibit a-2. here's a procurement compensation schedule. so we see the technician gets paid per specimen and the more specimens you provide the more money you make. on a side, i thought there was no profit here. but the more you provide, the more money you make above your hourly wage, exhibit 2-a. and then if you go to exhibit a-3, you have the consent form
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that the technician brings out to the mom to garner consent for the abortion. and i would just note if the panel would look at their exhibit a-3, anywhere in there does it say that the technician has a financial interest where they obtained $35 per specimen up to 10 specimens and 45 dollars per specimen for those 11 to 20? the financial incentive, is that shown in exhibit a-3, if you look at that quickly? >> no, it's not there. >> okay. does that concern you that we have the technician who is receiving the shopping list from the business, and it's also the person that's going to go in and obtain consent from the mom and the financial component to it. does that give you any pause or concern ethically? >> i think you have correctly
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shown that would never pass muster for an irb. >> ms. cunningham? >> yes, it has ethical problems. >> gentleman's time has expired. >> i field back. >> i thank the gentleman. i want to thank the first panel for being here today. we're ready to move to the second panel. and as the first panel departs, i want to provide unanimous consent so ordered to ms. black for her request to enter the department of health and human service office of inspector general report on tissue donation into the record so ordered. as our first panel leaves we will introduce the second panel as they take their places. dr. lee, dr. shamanda and dr. goldstein.
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and i would like to introduce the members of this panel. dr. patrick lee is the professor of bioethics and the director of the certain for bioethics. dr. kathleen m.shamanda
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professor of radiology and professor of biophysics a the center for imaging research at the medical college of wisconsin. and dr. lawrence goldstein is distinguished professor department of cellular and molecular medicine department of neuro sciences at the university of california san diego school of medicine. you are aware that the select investigative panel is holding on investigative hearing and will take your testimony under oath. do you have any objection to testifying under oath? the chair then advises you that under the rules of the house committee on energy and commerce, you are entitled to be advised by counsel. do you desire to have advised by counsel during your testimony today? if you will stand to be sworn in. if you're raise your right hand. do you swear that the testimony you're about to give is the truth, the whole truth and
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nothing but the truth? [ panel sworn ]. thank you may be seated. you will each have eight minutes for you opening statement. mr. lee, you may proceed. microphon microphone, please. >> thank you, madam chairman blackburn and thank you distinguished members of the committee and thank you for this opportunity for speaking of bioethics and fetal tissue. my name is patrick lee. i'm the professor of bioethics at francis can university of steubenville. and i have submitted by written testimony. i'll just give a brief summary of the arguments, some of the arguments there. in roe v. wade justice blackman claimed that the court would not settle the question of whether the fetus is a human being or
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not. and yet as a practical matter, the court denied two human fetuses the equal protection of the law and so tweeted them as in fact outside the class of human beings. in fact, however, as the standard text of 'em breology, develop tall biology and genetics assert, a human%gç( em is a distinct whole human individual. the evidence for this is quite clear. we know that a human embryo or fetus is a human being, a human organism in basically the same way we know that a six-week old infant is a human organism. looking at a 6-week-old infant, she's a distinct being, she is a complete being, although at an immature level of development since even though she cannot perform many of the actions that
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are typical of human beings, she's growing, actively developing herself to the point where she will do so. in a similar way, it is clear that a human embryo or a fetus is a distinct being since she proves -- since she grows in her own direction. she is obviously human since she has the genetic structure that is characteristic -- the genetic structure in her cells that is characteristic of humans. and she is a whole human being as opposed to functionally -- something that is functionally apart, such as a human cell or human tissue for unlike a cell or human tissue, she has within her structure, within her genetic structure, all of the internal resources needed to actively develop hes to the mature stage of a human being. this shows that she already is a
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whole human organism, only at the earliest stage of development. so the same kind of facts that show a 6-week-old infant as a human being also show that a human embryo or fetus is a human being, a human organism. and since what we are are human organisms, it follows that she is the same kind of being as you or me. only at an earlier stage of her life cycle. just as you and i once were ad les accidents and before that children and before that infants, so we once were fetuses and we once were embryos. moreover, since what makes you and me intrinsically valuable as subjects of rights is what we are, our fundamental nature, it is wrong intentionally to kill us and it would have been wrong
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to kill us when we were embryos or fetuses. all human beings unborn as well as born, no matter at what age or size, are created equal and are endowed by their creator with fundamental rights. it is gravely unjust to provide protection of the law to born human beings but to deny it to unborn human beings. since what is killed in abortion is a human being, the further act of governmentally funding and endorsing abortion providers is an additional injustice. by subsidizing abortion providers, the government, unlike the court in roe v. wade, cannot even make pretense of being neutral on the question of whether what is killed in an abortion is a human being.
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to subsidize and to encourage the killing of human fetuses is to presuppose in that act that what is killed in abortion is not a human being. first more, the donation of organs after death requires prior authortative consent in general it requires authoritative consent from the person who dies or if a minor, from her parent. in the case of fetal organs or tissues -- or in the case of fetal organs or tissues, parental consent would be required. this seems permissible in the case of spontaneous miscarriages or ep topic pregnancies. however that is not the case with relying on the consent of the parent of an elective abortion. parental authority over children is based on the special connection of parents to their
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children. a connection that creates a special responsibility of parents to their children, responsibility to care for them and to be devoted to their well-being. grave abuses of that relationship or actions indicating that a parent no longer has the child's interest at heart cause the parent to lose that parental authority. but the choice to have the child killed, even if done in confusion and with mitigated responsibility, is incompatible with a willingness to act in the true interest of the child. thus the practice of allowing or encouraging the use of fetal tissues obtained from elective abortions relying as it does on the mother's consent treats the bodily parts of the fetus as if they were parts of the woman's body. the practice makes so sense unless the fetus is assumed to
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be something other than a human being. therefore, governmental funding of abortion providers and the use of fetal tissues from elective abortions involve profound dehuman nigh zags of unborn human beings and are grave injustices. thank you. >> thank you, dr. lee. dr. shamanda, you're recognized for eight minutes. >> distinguished chair blackburn and honored members of the panel, thank you for this opportunity to offer my testimony in defense of infant lives and specifically in opposition to research using fetal tissue derived from induced abortions. i was trained in the disciplines of engineering and medicines receiving a ph.d. in the medical
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engineers jointly award i by harvard university and massachusetts institute of technology. i'm currently a professor in radiology at the medical college of wisconsin. i have served on grant review panels if are the national institutes of health for nearly 15 years, including a four-year term on the developmental therapeutics study section. i serve a national advisory committees for clinical trials and have founded two startup companies. most importantly i'm a wife and a mother. the views expressed are my own and do not represent the official views of the medical college of wisconsin. i am firmly opposed to research using fetal or embryonic tissue from induced abortions or proveerds. i'm compelled to create awareness amongst the community and my cleggs as to why the use
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of such tissue is both unethical and unnecessary. let me begin by can fining terms. the 'em bee yo and infant are different stages. when the cells are extracted in the early stages, these are human embryonic human cells obtained by destruction of the human embryo. when i speak of fetal tissue, that's cells or tissues or organ harvested from an aborted fetus. proponents of research using fetal tissue make sefrlg claims. the first claim is that without fetal tissue many of the life-saving treatments we have today would not have been possible. second, we're preventing the discovery of new therapies ap enthird it is alleged that proper ethical guidelines are already in place to avoid the connection between abortion and
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fetal tissue research. i will speak to each of these claims. first it needs to be made clear that there are no current medical treatments today that have required use of fetal tissues for their discovery or development. while the other cited polio vaccine was cited, the developers later testified that initial studies were also successful using cells that were not of fetal origin. those most vaccines offer ethical alternatives, not all are available in the u.s. and some such as chickenpox and hepatitis a do not have ethical alternatives. yet let me make it clear, there have never been a scientific reason requiring fetal cell lines for vaccine development. testimony given to the fda may 16th, 2001 underscores this point. the developer of two common
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fetal cell lines stated that his motivation for developing these cell lines from aborted fetuses was simply to see if it could be done. in comparison to what had already been done with animal cells. since then use of the cell lines has become wide spread and the manufacturers have no motivation to invest the time or money necessary to produce ethical replacements. due to lack of transparency, scientists can unknowingly become entrenched in using the cell lines. for example, the 292 cell line is offered as a standard kit from the biotechnological companies and branded under various names. only under specific requests are alternatives provided. this lack of transparency is devastating for scientists who have ethical objection to use of this tissue and amounts to immoral coercion.
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second, without continued access to the fetal tissue the discovery of new therapies would be prevented. the evidence is overwhelming to the contrary. insulin for diabetes is produced in bacteria. tpa for heart attack and stroke. there are are more than 70 successful treatments developed used adult stem cell sources. over 1 mull onbone marrow transplants have been performed to date. still some continue to claim that the fetal cells continue to provide the best option because they adapt to new environments easily. but alternative tissue and cell sources are available for research without ethical concerns and are demonstrating more versatility than originally thought. examples include stem cells from bone marrow circulating blood, as well as induced stem cells
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and even neurostem steals from ka daifrs. they've been used for the development of new treatments, proven in clinical trials and resulted in the formation of new companies which have successfully brought to market treatments that are routinely benefitting patients today. there is till no viable medical use for embryonic stem cells. yet the argument continues that keeping this avenue of research open may some day offer the only hope for a child with a devastating disease or a person with spinal cord injury. in 1997 in the "the new york times" it was reported that the nation's first transplant of fetal tissue into a person with spinal cord injury. the study required five to eight fetal spinal cord for each adult recipient but showed in significant therapeutic benefit. many studies followed. yet each continuing to claim
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great promise. the promise without benefit continues today at the cost of many human lives. so let me address this claim from another perspective. consider the possibility that a treatment is discovered using fetal tissue transplants and it's the only option for a certain disease. consider just one disease like parkinson's which affects up to 1 million people in the u.s. alone. based on clinical trial in sweden cells from at least three to four fetuses needed to treat each parkinson's patient. 4 million babies would need to be aborted to treat this one disease, not the mention the number needed to treat patients worldwide. imagine the magnitude of the demand for fetuses to cure another disease like alzheimer's which affects 45 million people worldwide. do we want a world where the most vulnerable are subject to the whims, desires and perceived needs of others. clearly we will have created industrialized harvesting of
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preborn babies, a crime against the human race. third, the repeated assurances that proper ethical guidelines are in place to avoid the connection between abortion and subsequent research are entirely inadequate. by purchasing fetal tissue products, the researcher is not far removed from the act of abortion. as recently described in the journal nature, one researcher continuing to pay $830 for each fetal liver sample. a purchase he must repeatably make. a few years ago before the recent medial conch it was toez go to the website of a biotechnology company and put any fetal body part in one's shopping cart and submit for a purchase. independent of whether a researcher is at the bedside of the one choosing an abortion or using a fetal cell behind created decades prior, by
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purchasing these fetal tissue products scientists are helping to create a market that drives the abortion -- >> dr. shamanda, please wrap up. your time has expired. >> finally i conclude with what is first and foremost. each and ever human life is sacred with the fundamental dignity that does not fend on his or her developmental stage. that belong to all from the first moment of existence. each life is unique and unrepeatable created by our human god. nothing, no argument, a scientific discoy rfr or cue to diminish the fact that using human embryos or fee tissueses constitutes assaults against the dignity of human beings who have the right to the same respect owed to every person. thank you. >> i thank you. and dr. goldstein, you're recognized for eight minute for an opening statement. >> good morning. actually good afternoon,
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chairman woman blackburn and other members of the committee. thank you for the opportunity to testify before you this afternoon about the important and potentially life saving research being done with fetal cells and fetal tissue. i'll give you three brief examples for the potential impact of this work. my bio is in your written materials. i'll summarize a few key points. my early faculty career was spent at harvard university where i became a tenured professor. i then moved to the university of california san diego in 1993 and i'm currently a distinguished professor in the department of cellular and molecular medicine in the department of neuro science. i serve as director of the stem cell program, scientific director and director of the sanford clinical stem cell center. i have received numerous honors and awards for my work. i've been a practicing scientist
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for 40 years. most recently using all types of stem cells to understand and treat alzheimer's disease, spinal cord, als and kidney disease. today i represent myself and the international society for stem cell research, the american society for cell biology and the coalition for life sciences which together represent in excess of 60,000 practicing life scientists and physician. my message is very simple. fetal tissue and cells that would otherwise be discarded play a vital royal in modern cutting edge biomedical research. these fetal tissues and cells cannot be easily replaced by 'em broe onic stem cells or adult stem cells. let me give you three examples. in the first example we are using fetal in the stud du of
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alzheimer's disease. this devastating disease affects 5.3 million americans and costs us in excess of 200 to $300 billion a years. it killed my other mother. this number doesn't reflect the real and terrible hardship that families face. we don't have a cure. no cure is obviously in sight and we really do have a to find a way to treat this terrible disorder. in my own lab the approach we're taking is to use reprogrammed stem cells to make alzheimer's type brain cells in the dish. that is to generate alzheimer's disease in a dish and to try to understand what's going wrong and to develop drugs that curtail the problems that happen b biochemically. a type of cell that's valuable in this work is called an astrocite. this is a support cell in the brain. we use fetal astrocites which
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are vital to the investigations. the fetal astrocites provide growth factors that help them establish connections and to be honest they produce factors that we do not have fully defined that help maintain the viability of the cultures and proving important to us to make new discoveries. it is possible to make astrocites from stem cells. you can write the label astrocites on the stem cells but they're not identical in their behavior and properties to fetal astrocites which arguably remain the gold standard to which we compare astrocites made from stem cells. we cannot yet use astrocites use made from stem cells to replace the fetal astrocites. these astrocites are vital to or investigations and i remain hei hopeful. in the second example, in the center i direct, the sanford stem cell clinical center we're
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using fetal neurorale tem cells. in animal versions of spinal cord yurj these fetal noourl stem cells have really remarkable properties and animals so treated exhibit treem dousely greeter performance after treat than before. what seems to happen is the fetal n rks neural stem cells when implanted make new new rons that create a real estate lay. as a result of the work in animals, we have fda approval to test these stem cells in patients. physicians and surgeons in any area have initiated phase 1 clinical trials and implanted them in four patients within the past year. the surgeries are arduous and
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the human volunteers are courageous in face of uncertainty about their future. thus far the trial is uk says. the surgery is safe, the fetal cells are safe and we'll be tracking the patients over the next few years looking for signs of recovery as the cells are given the opportunity to develop and positively impact the paralysis. we hope in the next year to begin transplanting patients with cervical spinal cord injuries which will give us a more sensitive test bed, we think. this trial and others like it -- this is not the only such trial. others are pursuing anal jous investigations with different sorts of cells. but these trials are vital to pushing medical science forward and to helping rescues people afflicted with spinal cord injury which is a terrible affliction. i'll just mention that the same fetal neural stem cells are also being used in phase 1 sean soon
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to be phase 2 clinical investigations for al sx or lou gehrig's disease at nih sponsored centers around the country. and a third and final example i chair a committee of nih funded scientists who are trying to learn whether it is possible to build new kidneys from stem cells. this goal is significant because we have 93,000 americans on waiting lists for kidney transplants and we recognize that the goal of building a functional kidney is audacious. but audacious goals build audacious dreams and progress. and i believe we can attain the goals with hard work, determination and time. it won't happen instantly, but it's something i think we can achieve. fetal tissue that would otherwise be discarded is vital to the future of this investigation, as it's only by examining fetal tissue that we're able to deduce and learn
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what the signals are that cells use to tell each other which cells are going to become kidney, which are going to become other parts of the body and so on. so our ability to examine the very earliest stages of human development are ultimately vital to our understanding and our ability to treat in diseases in the future including diseases of pregnancy, diseases of the placenta and dszs of children and adults. development depend on us learning what the early signals are and without this type of research we will be dramatically slowed down and people who would have therapies sooner will wait and suffer needlessly longer. so let me close by stating one again that in my opinion research with fetal tissue and cells that would otherwise be discarded is ethical, valuable and viet toll ongoing biomedical
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research projects. i want to thank the committee for you time and i'm prepared to answer questions that you may have. >> thank you, dr. goldstein. we will move to questions. on our side i'm going to reserve my time. and chairman pitts will be recognized for five minutes. >> thank you, madam chair. thanks again to the witnesses for coming today. let me just say something for the record that wasn't covered in the last panel. the issue of undercover journalism was raised. but i want to put this quote on the record. the indictment was alarming enough for two pro-abortion scholars at cornell to write an opinion piece defending undercover journalism, processer cob and door f said quote we are pro-choice and we support the important work of planned
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parenthood. but we find the prosecution of these citizen journalists, however deeply disturbing, undercover expo says play a vital role in informing the american public of important facts that would otherwise remain hidden. end quote. we're all familiar with local tv station e-teams and undercover expo says using hidden camera sometimes, falls narratives. mike wallace was famous. shotty conditions at the va. hospitals. the darkness of sex trafficking in cambodia. you can go on and on. for the record i'll put that. now let me go to this question, the gentleman mentioned harvard. i think using whether fresh fetal tissue vital to cures is an open question.
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presently harvard has 8,000 medical research projects under way, only ten use fresh fetal tissues. ten out of 8,000. now some defend the practice of fetal tissue collection from aboarded babies because the fetal tissue was supposedly contributes to loif-saving research today. first, can you tell us what deadly disease have been cured or can now be treated thanks to modern day collection of human fetal body parts? anyone? no. and secondly -- >> i think -- >> i'm sorry. >> i would like to respond. i think the case of vaccines is appropriate. the fact is that's how those vaccines were developed. >> which vaccines? >> polio and the other long list that the professor charro gave us. it's easy to look in the
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rearview mirror at research and say now that we know everything that we know, it would have been so much easier to do it a different way. you don't have to do it this way. but the fact is, as you well know, research is a slow, sufficient enterprise. >> yeah, reclaiming my time. the simple fact that the vaccine were polio was developed using monkey tissue, not human fetal tissue. let me go on to my question. and it has to do with conflict of interest. suppose a tissue procurement business makes financial contributions to an abortion clinic from which the company harvests tissue. what ethical issues exist if the clinic notifies the company in advance that the clinic has particular abortions scheduled that would be good fsh acquiring particular organs or tissue.
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dr. lee. >> who is making the contribution to whom again? >> the procurement business -- nks is making the contribution to the abortion clinic? >> yes. >> okay. well i think there's a conflict of interest in that there's a -- there's not the separation. in all of these organ transplant cases, we want to have a different set of team making the decisions about how to proceed, how to treat a patient. and then a different set of team from that on talking to the family about whether to make a donation. and if it's -- seems to me it's the same team here that's working on adorbortabort, this also trying to get the consent from the woman, which i think is
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questionable, whether it has authoritative authority there. but getting consent from that woman to use the fetal body parts. so i think there's a conflict of interest there, yes. >> dr. shamanda? >> yes, there's definitely a conflict of interest. i would like to also add, i oversee a tissue bank for brain tissue and spinal cord tumor tissue. our procedure is such that we have to have someone constantly on call with a pager and they have to be there in the o.r. ready to go 30 minutes in tissue removal. and if you don't get the tissue within 30 minutes of removal, it's no longer useful for research, especially the more advanced research. it's very difficult to see how there can be a separation between the research and the requirements of the scientific community and the act of procuring that tissue. >> my time has expired. >> gentleman's time expired.
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plmplt skhakowskiin' y, you're recognized for five minutes. >> you oppose to issue of fetal tissue in research right? is this the position that your university has? >> i represent my own views. not any university. >> last september, the president and ceo of your university testified in opposition to a wisconsin state senate bill that would prohibit researchers from the state from using fetal tissue in their research. dr. goldstein, so my colleagues have used documents, e-mails from researchers seeking fetal tissue. and i don't know, maybe it's in an effort to shock us. what is your feeling about, you know, asking for, for example, you know, it may not sound great but a liver, thalamus, that kind of thing, if you have specific research going on? do you see anything unethical about that? >> absolutely.
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>> no. i'm asking dr. goldstein that. >> excuse me. >> no i don't see anything unethical about asking for specific regions. when we get brain tissue from our alzheimer's disease brain bank, we will request the hippocampus or a part of the cortex or a specific part of the brain as part of the normal proceed for obtaining postmortem tissue. >> thank you. i wanted to ask you. there's concerns about the recent outbreak of zika, of course, and it's led to renewed focus on infectious diseases that have the potential to rapidly spread. there's a strong link of zika virus during pregnancy and the devastating birth defect. at this point there's in treatment or vaccine for zika. given the majority's insis taens on calling this the select
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investigative panel on infant live wx it would seem important to focus on ways to improve infant lives, like finding a way to prevent zea what. cda released guidance on the collection and of zika virus testing. they recognize that the study of the tissue is the means through which we can understand the virus. dr. goldstein, how are we expected to learn and understand the implications of the zika virus without studying the fetal tissue? >> i think that if you want to understand the zika virus, the most efficient place to start is with the fetal tissue that's infected. that' self evident to me. >> isn't it imperative that researchers have access to brain tissue to the uddy the difference between the healthy cells and those potentially
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infect? >> it's often nor gotten that the brain is made of dozens of cells. we don't know what cell type is being affected by the virus. it's only by surveying the landscape that we'll get the clues. >> they've labeled the zika virus as a public health emergency. what is your view of preventing the use of fetal tissue research to study and hopefully stop this growing public health emergency? >> i think that would be sticking your head in the sand. >> thank you. would not having fetal tissue as a resource in the study potentially delay finding a cure? >> it would absolutely delay it. you have to go to the source if you want to understand what's going wrong. >> this type of research could lead to treatments and cures that benefit infant lives, could it not? >> that would be the hope. you know, there's never any guarantee with research that we're going to get to where we want to go. but we're going to give it a good solid try and we have to
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have appropriate tools. >> this type of -- beyond zika virus, fetal tissue is important for research into other conditions that impact infant and fetal development? is that correct?? and i'm wondering if you can name what else we might be investigating. >> well, another interest in my lab is in the disorder called c-1 which is devastating cholesterol transplant disorder that kills kids in their first or second year of life. we use fetal astrocites in our investigation of that disorder as well. we've recently discovered what i hope will be two drugs that may be effective. we need to get into the clinical trials to find out. it's the sort of thing that you could imagine doing on multiple occasions down the line. you know, again, research is not a guarantee but we have to go through the door and look in order to find out. >> thank you. and i yield back. >> ms. black, you're recognized for five minutes. >> thank you, madam chair and i
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thank the panelists for being here. i think it is ironic that we sit here and talk about how we'll benefit children and at the same time we're talking about how it's okay to abort a baby and, excuse me, and to dissect it and take out body parts and use that for research. at the same time we talk about how this will save babies. it's ironic. do we want to save babes or not save babies. but that's not my question. my question is babies that are born alive in the abortion clinic uks. just last week there was a 20-week old child born alive in phoenix. there was a fire department close and had to transport the baby to the hospital. since sometimes these children are born alive, either during or right after the abortion, should abortion clinics has neonatal care equipment in those clinics to help to save those babies? dr. lee, do you have a thought
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on that? >> yeah. i mean, i think that if we were treating someone that we really, that we really generally recognized as a human being, as having intrinsic dignity, we would say that we need to have available the kind of care that is needed if something goes wrong. and we would not fight every, you know every inch of the way when the government, whether it's state or federal level, tries to require protection for babies who are born alive. so yes, i think, yes, neonatal care, access to ambulance care, i think that is a minimum, i think. >> dr. shamanda, do you have a thought on that? >> i can't imagine -- because when you have the neonatal care unit you're recognizing that this is a human person and i
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think absolutely it must be because it a human person. it would be wonderful if it existed. >> how about you dr. goldstein, do you have a thought on that? >> i am not an expert on the sort of equipment that should be present in an abortion clinic and it would be inappropriate for me to speculate. >> well, can i ask you, do you think it's wrong to let a child die that is born in an abortion clinic and needs medical assistance? >> i think it is wrong to let a child die. >> thank you. the second question that i have along these lines, should the mother be told as a prt of that consent form that there's a chance that your baby will be born alive and that our clinic will give your baby the best care? ethically, what do you think about that, dr. lee? >> well, it's -- i think, i think -- it's hard to say when you're talking about percentages. and it's a difficult question to answer because the premise of it
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is that we're talking about giving -- asking someone full consent for something that i think they, if they generally understood and had a moral outlook, just outlook they would not really want to consent to that. it's kind of a -- i find it difficult to answer that question. but i would say that i think in general there is not enough consent -- enough information given to the woman about the nature of what it is that's being killed in an abortion. sometimes it's even hidden from her that anything is being killed, that there even something alive. so if we could just get even just general really good informed consent about the nature of that procedure that we're talking about, that would be a first step and then yes, the other things should be brought in when you're talking
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about the possibilities. even if it's a remote boss nlt, it's such a horrific boss about and it also, i think, bears on the question that she should be asking about what kind of procedure is this. >> thank you. with a little bit of time that i have left, i'm not so sure after we complete our investigations and our information that we'll receive, as a result of this committee, that there shouldn't be another blue ribbon commission. we talk about this blue ribbon commission that was under president reagan in 1984. we're 30 years down the road. there's so much medical science advancement here preside. at that point in time, the viability -- i was young out of nursing school. the viability was around 36 weeks. if we had a baby that was born at 36 weeks or less, we really didn't have a lot of medical advancements for saving that child. but i think this whole issue really needs to be revisited and rather than going back and looking at a blue ribbon
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commission that was done some 30 years ago, that may be one of the recommend occasions that we have and i yield back the balance of my time. >> gentleman lady yields back. mr. diget you're recognized for five minutes. >> as with the last panel i would appreciate yes and no answer if possible. my first question, dr. lee, you're a professor, a doctor of philosophy, correct? and dr. shamanda, you are a pld in medical engineering, correct? >> correct. >> and it says your primary focus of your lab is the development of m mri methods to assess brain tumors is that correct? >> that's definitely a focus. >> you dr. goldstein, you run a lab is that correct? >> yes. >> so i'm going to talk to you since of all of the six witnesses we've had today, you seem to be the only one with experience in being able to talk
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about fetal tissue research and other types of cell based research. first question i want to ask you is, dr. donovan said we still have fetal cell lines developed from fetal tissue from abortions from before and from a long time ago when they were used for vaccines and other purposes. those should still. sufficient. do you believe that exist l fetal cell lines are sufficient or do you think it's important to develop new fetal cell lines? >> i think that as methods improve, you generally are going to want to revisit the question of developing new cell lines with superior methods. >> and the three studies you talked about in your testimony, are you using new cell lines or some of the existing cell lines from before? >> the fetal neural stem cells are cell lines that have been in existence for some time and have been through substantial
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expansion. the fetal astrocites are earlier stage primary cultures but they're also established. >> okay. and my next question related to that, as dr. shamanda said, there's no actually she said in her testimony it's clear that no medical, current medical treatments exist that have required using fetal tissues for their discovery or development. is that a correct statement, yes or no? >> i think that's an incorrect statement. >> okay. now, there's a number of new research studies, including the ones that you and your facility are investigating that are using fetal stem cells, fetal cells is that correct?? >> that's correct. >> and several of the witnesses today have testified that the cell lines are all interchangeable so that to do your research and this other
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research you would not need to have fetal cells. is that correct? >> i don't agree with that. in my experience cell lines are not interchangeable. >> i know there's a number of new types of cell lines out there. i've done a lot of work, as you know, on embryonic stem cell research. but there's a lot of different kinds of cells, there's human, there's some nasal astrocites that are being used and other types. can they all just be slotted in for each other or do you need all different types of cells to do research? >> so all make two comments about that. one is we need all different types of cells to do research because we don't know what is best and second, in order to find out what's best, we have to do comparative studies and compare each against the other to figure out what's actually going to turn out to be superior for medical application. >> it's not like the ips cells are the same thing as the fetal tissue cells? >> no. they're different. >> okay.
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now there was also some testimony that -- there was also some testimony from several different of the witnesses, none of them cell researchers like you that we don't need fetal tissue from induced abortions because wu with just use fetal tissue from miscarriages. have you heard testimony like that today and before? >> i have heard that statement made. >> and are you familiar with the view that because the timing or recognition of a spontaneous abortion or ek topic pregnancy may result in a serious situation. that it's not suitable for research purposes are you aware of that. >> i'm aware of that. >> do you think that we can substitute the tissue from spontaneous abortions or ep
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topic pregnancies. >> i don't. they have genetic abnormalities that render them i have no further questions. >> gentle lady yields back. dr. buschon. >> thank you very much. i did my residency at the medical college of wisconsin, i spent several years there. my wife went to medical school there. welcome all of our witnesses. dr. goldstein, in your testimony you fail to mention that functional kidney organoids have already been grown. >> it is true that organoids have been made, an organoid is not the same as an organ. dr. little in whose lab that work was done is a member of our team to try to harness the technology -- >> fair enough. so with fetal cells then you're
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trying to grow organs? >> ultimately the goal would be to figure out whether using fetal cell lines or embryonic cell lines or reduced reprogram cell lines, whether it's possible to build a functional kidney -- >> okay. and the same thing if you've already made it to organoids from ips cells and adult stem cells seems like you're further along. >> i'm not sure i agree with that. >> okay. it's your area. i can't dispute that. you mentioned fetal cells compared with spinal cord injuries. are there quote, unquote cure to spinal cord injuries from stem cell sns. >> there are published papers from a number of labs around the world that claim to have seen dramatic results with cells from adult sources in spinal cord injury. in a number of cases those studies have been discredited, in a number of cases we're just
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not sure and we need to have further investigation to find out. >> okay. thank you. can i ask, where do you guys get your fee total tissue? >> so the fetal neurostem cells we obtain for our clinical trials come from our collaborating company neurospin that expands them to large numbers. >> where do they get the tissue to start their cell growth? >> i honestly don't know. >> do they pay for it, do you know? >> i don't know, but i presume that since it is against the law for them to pay for it that they do not pay for it. >> okay. and so somebody made that since tissue would otherwise be discarded, i'm asking a philosophical question, should anyone be paying for fetal tissue or making a profit from it since it was just going to be, quote/unquote discarded
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anyway? the reason i ask that is because we know there are agencies that have been making a lot of money off of this tissue. so just philosophically would you think that wroould be the right thing that money would be exchanged -- i understand it takes money to process the tissue. >> right. exactly. i'm comfortable with the law of the land as it currently sits. >> okay. dr. shamanda. >> yes. >> that same question. if the tissue is discarded does it make any ethical sense that people would be making a profit from it if it's just, you know, as been quoted by many people, a couple people in this hearing, it's going to be discarded anyway, what's the big deal, right? then how come we're selling it? >> right. >> and making a profit from it? >> right. the ends never justify the
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means. there are guidelines in place. they clearly are by creating the market that's driving the development of these cell lines or use of fetal cell tissues, the biopharmaceutical -- you know, it's clear it's a money making effort. and i also want to speak to the fact that if you don't mind there's been a lot of discussion of the 1988 advisory panel, this blue ribbon panel people have been discussing and i want to clarify because in my reading of this panel there's actually 21 panel members and of the 21 there are two or three that dissented from the majority opinion. now, the majority opinion itself basically was that we agree that there is a moral question here. >> okay. i'm going to have to move on. i'm running out of time. >> okay. >> dr. lee, do you have any comments on that question about -- i mean, it's just like,
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i mean, it makes no sense to me that if there's no money in t s this, the tissue and it's about research and i support research, don't get me wrong, that was addressed in the last panel, that why are people -- why are there organizations out there wanting to do this if there's just no money involved, it's going to be discarded anyway, what's the big deal, we'll use it for research? >> my comment is if the argument that the fact these would be discarded anyway had any merit, it would prove too much. it would prove that, well, then, since it's going to be discarded anyway, we might as well, you know, allow people to make money off this. in any situation where someone dies who did not consent to have his body used for research, the same argument could be made about that person's body and
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say, well, look, yes true, that person did not give consent -- >> understood. my time has expired. thank you very much. >> i thank the gentleman. ms. speier, you're recognized for five minutes. >> thank you all. dr. lee, you're not a researcher, correct? >> not in physical science. >> not in physical science. and yet this hearing's about the use of fetal tissue. >> right. >> in a scientific setting. >> my area of study is bioethics. >> it's a little confusing to me why this panel which should be comprised of scientists doesn't have a whole panel of scientists but you are an ethicist. let me ask you this, one of the questions my colleagues asked was, is it unethical for a tissue procurement facility to contribute to an abortion clinic? and you gave an answer. do you think it's ethical for members of congress to receive
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campaign contributions and then vote for a specific bill from that institution or carry a bill for that institution? >> i'd have to get more specifics by meaning a bill for that institution. if it's a bill, yeah -- if you're saying if the bill is precisely not for the public good but only this specific institution, yeah, that would be unethical. but then of course that raises the question of whether we're talking about the public good or trying to promote a specific institution. and i think that -- >> thank you. thank you for your comments. it's kind of preposterous for us to sit upon this committee and discuss ethical behavior when we are in the business of campaigning and raising money from individuals who are interested in getting us to vote one way or another. let me ask you, dr. goldstein,
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41 academic institutions have written a letter emphasizing the need for continued fetal tissue research. in your own words can you explain what's at stake if this research is not permitted to continue? >> predicting the future is a very dodge business and any of who claim to predict the future have got to do so cautiously. but i think it's fair to say research into deadly disease will slow down. and that's not virtual. if i'm two years later finding a therapy for a disorder, that's two years worth of people who have developed that disorder and passed away from it. i think back to christopher reed and we talked at that time about what was at stake for people like mr. reeve.
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he sadly did not live long enough to see us putting an appropriate fetal neurostem cell type into clinical trial. i'm sorry about that because i think he would have been really heartened to see that. and he ran out of time. >> i was very impressed by your work with spinal cord injuries. there are many people paralyzed whose quality of life has diminished great ly. the work you're doing where you're using fetal neurostem cells has the potential, does it not, to create a means by which individuals in the future who are living in a paralyzed state could in fact have fuller function? >> that's the potential if everything goes according to plan. >> there was a reference made earlier about reconstruct -- of cosmetic purposes that fetal tissue could be used for.
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it was interesting that my colleague didn't reference the word reconstructive and cosmetic purposes. and i think we fail to appreciate that skin graphs are used in very important reconstructive purposes. persons who are burn victims benefit by the use of skin graphs. i personally have a body that is full of skin graphs due to an injury i received over 36 years ago. so let's not diminish the importance or use of skin graphs in the effort to potentially improve people's lives. i'm also concerned and i've only got 20 seconds left, so dr. goldstein, i'm concerned about the chilling effect on researchers who are now being


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