Prime Time Replay:
Dr. Thomas Murray
on Medical Ethics
MsgId: *breakthrough(9)
Date: Wed Dec 11 21:02:36 EST 1996
From: moderator At: 206.80.181.190
Hello, and welcome to Breakthrough Medicine. I'm your host--Madeleine Lebwohl--and tonight I'll be speaking with Dr. Thomas Murray, who in addition to being Director of the Center for Biomedical Ethics at Case Western Reserve University in Ohio, is currently chairing a subcommittee of the National Bioethics Advisory Commission.
MsgId: *breakthrough(10)
Date: Wed Dec 11 21:03:41 EST 1996
From: moderator At: 206.80.181.190
Dr. Murray, let's talk a little about your work with the NBAC. What is your subcommittee tackling right now?
MsgId: *breakthrough(11)
Date: Wed Dec 11 21:03:59 EST 1996
From: Tom_Murray At: 129.22.125.21
Hello Madeleine. Pleased to be here.
MsgId: *breakthrough(12)
Date: Wed Dec 11 21:06:32 EST 1996
From: Tom_Murray At: 129.22.125.21
Our subcommittee is working to develop its agenda. We are looking at genetic privacy, genetic discrimination, and the use of tissue samples for DNA sequencing.
MsgId: *breakthrough(13)
Date: Wed Dec 11 21:07:57 EST 1996
From: moderator At: 206.80.181.190
Does each member bring issues to the table, or has congress or different government agencies set your agenda?
MsgId: *breakthrough(14)
Date: Wed Dec 11 21:10:39 EST 1996
From: Tom_Murray At: 129.22.125.21
We were given the two broad areas in the executive order that established the Commission. Under those broad headings we have freedom to establish our own agenda. We can also take us new issues if we choose.
MsgId: *breakthrough(15)
Date: Wed Dec 11 21:12:39 EST 1996
From: moderator At: 206.80.181.190
Genetic privacy and genetic discrimination seem to be concerns that affect almost everybody. Recently a woman with Marfan's disease was in the news--she was going to lose her job because of it.
MsgId: *breakthrough(16)
Date: Wed Dec 11 21:12:46 EST 1996
From: Tom_Murray At: 129.22.125.21
A typo already! That should read "take up."
MsgId: *breakthrough(17)
Date: Wed Dec 11 21:13:28 EST 1996
From: moderator At: 206.80.181.190
Where do you think this issue of identifying disease, and how to react to it, is headed?
MsgId: *breakthrough(18)
Date: Wed Dec 11 21:14:11 EST 1996
From: moderator At: 206.80.181.190
The typos go with the territory.
MsgId: *breakthrough(19)
Date: Wed Dec 11 21:14:49 EST 1996
From: Tom_Murray At: 129.22.125.21
Since all of us probably have more than one unfavorable genetic mutations, you would think that other people and institutions would look kindly on someone with a genetic disease. But in fact that can be a disadvantage both with employers and insurers.
MsgId: *breakthrough(20)
Date: Wed Dec 11 21:16:14 EST 1996
From: moderator At: 206.80.181.190
Since what you're saying is true--who is so perfect?--then why is there a lag between understanding the extent of a disease and its effect on how you work, and the current discrimination?
MsgId: *breakthrough(21)
Date: Wed Dec 11 21:17:09 EST 1996
From: Tom_Murray At: 129.22.125.21
There are a couple of studies--small ones--that demonstrate that genetic discrimination is a reality for some people. If you have any doubts, talk to those who have genetic diseases, or who have family members with those diseases.
MsgId: *breakthrough(22)
Date: Wed Dec 11 21:19:10 EST 1996
From: Tom_Murray At: 129.22.125.21
Unfortunately, the way the world works means that health insurers, for example, work in a kind of Catch-22. They want to insure people who aren't going to get sick, because then they'll have to pay to take care of them. Seems to me that our health care system ought to reflect our values better than tbat.
MsgId: *breakthrough(23)
Date: Wed Dec 11 21:19:30 EST 1996
From: moderator At: 206.80.181.190
It took many years for pregnancy to be seen as part of life, not debilitating, and deserving of a respectful attitude in the workplace. Also, time for family concerns. Does genetic discrimination have to follow a similar time frame?
MsgId: *breakthrough(24)
Date: Wed Dec 11 21:22:54 EST 1996
From: Tom_Murray At: 129.22.125.21
A very good question. Pregnancy, though is a temporary condition (though it may not seem like that at the time). Genetic conditions are "permanent" in one sense --the gene isn't going to disappear. But some genetic conditions have little or not effect on one's life. And for others, our hope is that effective treatments eventually will come.
MsgId: *breakthrough(25)
Date: Wed Dec 11 21:24:44 EST 1996
From: moderator At: 206.80.181.190
In some ways, the question really is, when did this myth of the perfect genetic code begin? The same population got insurance twenty years ago, before the diagnosis. Isn't there a legal side to this? Or is purely moral?
MsgId: *breakthrough(26)
Date: Wed Dec 11 21:25:11 EST 1996
From: Tom_Murray At: 129.22.125.21
I left out one of the topics the Commission was asked to look at-- gene patenting.
MsgId: *breakthrough(27)
Date: Wed Dec 11 21:27:16 EST 1996
From: moderator At: 206.80.181.190
That is certainly part of the same issue--who owned the gene before it was given a number?
MsgId: *breakthrough(28)
Date: Wed Dec 11 21:28:47 EST 1996
From: Tom_Murray At: 129.22.125.21
Sorry, lost you for a minute. Netscape performed an "illegal operation." When doctors do that they get arrested.
MsgId: *breakthrough(29)
Date: Wed Dec 11 21:29:45 EST 1996
From: moderator At: 206.80.181.190
Cyberspace has a different oath.
MsgId: *breakthrough(30)
Date: Wed Dec 11 21:30:49 EST 1996
From: Tom_Murray At: 129.22.125.21
People will get sick now and in the future. From the insurer's point of view the trick is to bet on the healthy ones. If I know, or have reason to suspect, that this individual is going to be expensively sick, I (if I were an insurer) would prefer not to have that policy.
MsgId: *breakthrough(31)
Date: Wed Dec 11 21:32:48 EST 1996
From: moderator At: 206.80.181.190
Would you say that, for the moment, genetic diversity (including disease) is in a different legal category than ethnic or religious diversity?
MsgId: *breakthrough(32)
Date: Wed Dec 11 21:33:50 EST 1996
From: Tom_Murray At: 129.22.125.21
Gene patenting is an interesting issue. Some people think there is no ethical issue here. Others see the patenting of genes, especially human genes, as deeply suspicious. We'll talk about it at the meeting on Friday.
MsgId: *breakthrough(33)
Date: Wed Dec 11 21:35:38 EST 1996
From: moderator At: 206.80.181.190
Isn't there a suspicion that the average person loses control of some aspect of their health evaluation, or health care, or some unknown quantity, when a gene is patented by a corporation?
MsgId: *breakthrough(34)
Date: Wed Dec 11 21:36:00 EST 1996
From: Tom_Murray At: 129.22.125.21
Whether genetic difference is in the same category as ethnicity or sex is both a legal and a moral question. I am not a lawyer, but what I know of the law says that it is treated diffently. Although there are a number of states that have passed laws against genetic discrimination. The laws are very narrow, however.
MsgId: *breakthrough(35)
Date: Wed Dec 11 21:37:28 EST 1996
From: moderator At: 206.80.181.190
You've just come out with a book, 'The Human Genome Project and the Future of Health Care.' Do you touch on these issues?
MsgId: *breakthrough(36)
Date: Wed Dec 11 21:37:57 EST 1996
From: Tom_Murray At: 129.22.125.21
I hope to learn much more about the concerns people have with gene patenting. That's one reason the Commission always includees time for public comment, and why all the meetings are announced in advance and are open to the public.
MsgId: *breakthrough(37)
Date: Wed Dec 11 21:40:23 EST 1996
From: Tom_Murray At: 129.22.125.21
Thanks for mentioning the book. Yes, issues of genetic discrimination in the workplace and by insurers are discussed there, though not gene patenting. We wanted to explore the impact of the Human Genome Project on health care in the US. I have two co-editors for the book, by the way--Mark Rothstein and Bob Murray.
MsgId: *breakthrough(38)
Date: Wed Dec 11 21:41:35 EST 1996
From: moderator At: 206.80.181.190
And what impact do you see?
MsgId: *breakthrough(39)
Date: Wed Dec 11 21:43:50 EST 1996
From: Tom_Murray At: 129.22.125.21
For one thing, the practice of medicine is likely to change in several ways. Doctors may become advisors, telling you much more about your particular risks for disease, offering not so much predictions as "Weather reports" about your likely future health. For another, doctors will have to know much more about genetics than most do today.
MsgId: *breakthrough(40)
Date: Wed Dec 11 21:46:17 EST 1996
From: moderator At: 206.80.181.190
But are these 'weather reports' in fact more accurate than what we here on the news? Is all this forecasting fair? Moral? What moral issues do you see arising from the Human Genome Project?
MsgId: *breakthrough(41)
Date: Wed Dec 11 21:47:27 EST 1996
From: Tom_Murray At: 129.22.125.21
One of the most difficult porblems may be drawing lines at self-manipulation. Some of the fruits of the genome project will be powerful ways to alter our anatomy or physiology. And some of them will not be limited merely to curing illness, but may tempt us to use them to "enhance" ourselves or our children.
MsgId: *breakthrough(42)
Date: Wed Dec 11 21:49:15 EST 1996
From: moderator At: 206.80.181.190
Will your commission be offering guidance for these issues?
MsgId: *breakthrough(43)
Date: Wed Dec 11 21:50:28 EST 1996
From: Tom_Murray At: 129.22.125.21
Let's get back to health insurance and whether it is fair for insurers to exclude people because they might become ill. What's the purpose of health insurance? We need to ask that as a society, and we need to insist that health insurance be available for the purposes we deem right. I think it's ludicrous to allow the Catch-22 now in the system to become ever more powerful, as genetic information might make it. The trick is to reform the way we finance health care in the US.
MsgId: *breakthrough(44)
Date: Wed Dec 11 21:51:32 EST 1996
From: moderator At: 206.80.181.190
The public--the people who need to buy health insurance--certainly would agree with you. Do you think legislation is the answer?
MsgId: *breakthrough(45)
Date: Wed Dec 11 21:52:24 EST 1996
From: Tom_Murray At: 129.22.125.21
The world goes seem to go round in circles. Five years ago I chaired a Task Force for the Human Genome Project that wrote a report on Genetic Information and Health Insurance." We may have to revisit that issue again, this time from the perspective of a Presidential Commission.
MsgId: *breakthrough(46)
Date: Wed Dec 11 21:53:17 EST 1996
From: moderator At: 206.80.181.190
What were your findings five years ago?
MsgId: *breakthrough(47)
Date: Wed Dec 11 21:55:01 EST 1996
From: Tom_Murray At: 129.22.125.21
Health insurance is a massive product in the US. I suspect some kind of legislation will be needed that restructures the way we pay for health care--that removes the Catch-22. But it's an enormously complex problem, not one to deal with hastily. It's worth noting that the insurance industry members of the Task Force were willing to do away with the Catch-22 if we went to a system of universal participation.
MsgId: *breakthrough(48)
Date: Wed Dec 11 21:57:09 EST 1996
From: moderator At: 206.80.181.190
The worth of the individual seems to be at stake here, and you've also just come out with a book called 'The Worth of a Child.' Is genetic testing a part of how we will evaluate worth?
MsgId: *breakthrough(49)
Date: Wed Dec 11 21:59:29 EST 1996
From: Tom_Murray At: 129.22.125.21
As it happens, today is the official publication date of the Worth of a Child. And no, I certainly hope genetics per se will have no bearing on how we value children. It does raise the interesting question of how important rearing parenthood is as compared to genetic parenthood.
MsgId: *breakthrough(50)
Date: Wed Dec 11 22:01:49 EST 1996
From: moderator At: 206.80.181.190
Is our society debating rearing versus genetics adequately? What is your take on how to evaluate 'worth'?
MsgId: *breakthrough(51)
Date: Wed Dec 11 22:02:29 EST 1996
From: moderator At: 206.80.181.190
And congratulations on the publication of your book!
MsgId: *breakthrough(52)
Date: Wed Dec 11 22:04:20 EST 1996
From: Tom_Murray At: 129.22.125.21
"Worth" means many things; that's why I chose the word. I believe we can understand a variety of bioethical problems involving creating, gestating and raising children better if we think about them in the framework of the intrinsic worth of a child, and of the significance of children in the lives of the adults who raise them. Issues like assisted reproductive technologies, adoption, prenatal genetic testing, and even abortion.
MsgId: *breakthrough(53)
Date: Wed Dec 11 22:05:49 EST 1996
From: Tom_Murray At: 129.22.125.21
Thanks for the congratulations. I just want to see it in a bookstore!
MsgId: *breakthrough(54)
Date: Wed Dec 11 22:08:29 EST 1996
From: moderator At: 206.80.181.190
I certainly hope people follow your complete view of what comprises an individual. Dr. Murray, our time is about up now. Following is a chat hosted by Marilee. Will you be joining her?
MsgId: *breakthrough(55)
Date: Wed Dec 11 22:10:31 EST 1996
From: Tom_Murray At: 129.22.125.21
For a while--until Netscape fails on me again. It's happened three times during the interview.
MsgId: *breakthrough(56)
Date: Wed Dec 11 22:13:14 EST 1996
From: moderator At: 206.80.181.190
Then let me wish you good night, and thank you for joining me on Breakthrough Medicine. Good luck with your books, and the crucial work of your commission. Please stay tuned for the open chat that follows, hosted by Marilee. Dr. Murray will be around for questions. Good Night and please tune in next week when I speak with Dr. Lee Hood, who is doing work on the Human Genome Project.
MsgId: *breakthrough(57)
Date: Wed Dec 11 22:13:23 EST 1996
From: Mod:_Marilee At: 206.80.175.29
I think it may have failed Madeleine, too. :)
MsgId: *breakthrough(58)
Date: Wed Dec 11 22:14:20 EST 1996
From: Mod:_Marilee At: 206.80.175.29
Welcome to open chat! Folks, this is your chance to put in questions for Tom!
MsgId: *breakthrough(59)
Date: Wed Dec 11 22:15:16 EST 1996
From: Mod:_Marilee At: 206.80.175.29
To type using a name other than "guest," go to http://www.omnimag.com/iwc.html Put in your name, no need for a password, and click on Enter IWC. Choose Breakthrough and you'll be back here with us!
MsgId: *breakthrough(60)
Date: Wed Dec 11 22:15:29 EST 1996
From: Tom_Murray At: 129.22.125.21
Good talking with Madeleine.
MsgId: *breakthrough(61)
Date: Wed Dec 11 22:16:12 EST 1996
From: Mod:_Marilee At: 206.80.175.29
Thanks for staying, Tom! Let me start with a question of my own. Do you think there will be genetic judges in the future? People who decide what is acceptable and what isn't?
MsgId: *breakthrough(62)
Date: Wed Dec 11 22:19:23 EST 1996
From: Tom_Murray At: 129.22.125.21
That particular monstrosity goes by the name of eugenics. I would hope that the experience with Nazi Germany and the Racial Hygiene movement there would cure us of any temptations towards eugenics.
MsgId: *breakthrough(63)
Date: Wed Dec 11 22:20:40 EST 1996
From: Mod:_Marilee At: 206.80.175.29
But who does decide "worth." I'd like a bright musically-talented child. I know someone who would consider that a sub-standard child. Where do we string the line for what's worthy and what's not?
MsgId: *breakthrough(64)
Date: Wed Dec 11 22:28:55 EST 1996
From: Mod:_Marilee At: 206.80.164.5
Sorry, I got dropped, too, this time. :)
MsgId: *breakthrough(65)
Date: Wed Dec 11 22:35:08 EST 1996
From: Mod:_Marilee At: 152.172.164.36
I think we lost Tom again. :)
MsgId: *breakthrough(66)
Date: Wed Dec 11 22:36:13 EST 1996
From: Mod:_Marilee At: 152.172.164.36
Folks, this is open chat. What do *you* think about biomedical ethics? Where do we draw the line? If you test likely to get breast cancer, should you be denied a job? If your father has Alzheimer's at a young age, should you be forced to retire early?
MsgId: *breakthrough(67)
Date: Wed Dec 11 22:36:20 EST 1996
From: Tom_Murray At: 129.22.125.21
It was my turn to be disconnected. I think that we face a real challenge in the realm of prenatal genetic testing. It will be possible in principle to test for an enormous variety of things, most of them probably traits with no implications for health or disease. We need to ask as a society if we want have our professionals offer such a an open-ended service. I try to address this in one of the chapters in "Worth..."
MsgId: *breakthrough(68)
Date: Wed Dec 11 22:38:44 EST 1996
From: Mod:_Marilee At: 152.172.164.36
Let's leave out the extreme racists. We already have folks who abort fetuses who would be disabled children. What about their worth? Is Down Syndrome okay, but anencephaly not?`
MsgId: *breakthrough(69)
Date: Wed Dec 11 22:41:20 EST 1996
From: Tom_Murray At: 129.22.125.21
There is a project going on right now at a research institute called the Hastings Center in which people with disabilities are asking those very hard questions about prenatal diagnosis. They are asking them to professionals who do prenatal testing and to philosophers and others who study it and think about it. It is an enormously, and occasionally gut-wrenching, conversation.
MsgId: *breakthrough(70)
Date: Wed Dec 11 22:42:32 EST 1996
From: Tom_Murray At: 129.22.125.21
Oops! That should have read "enormously troubling,..."
MsgId: *breakthrough(71)
Date: Wed Dec 11 22:43:46 EST 1996
From: Mod:_Marilee At: 152.172.164.36
I think it will be a very hard situation. I have lots of breast cancer in my family, but I won't be tested. Either I'll get it, or I won't. I do self-exams, I get mammos every 6 months or every year (whatever the radiologist recommends) and I'm careful about diet and exercise. But testing won't *change* anything. So I'm not getting tested. What's the value of tests -- prenatal or otherwise -- when we can't do anything about the disease?
MsgId: *breakthrough(72)
Date: Wed Dec 11 22:43:54 EST 1996
From: guest At: 152.169.110.122
I am very excited to purchase your book. This is a topic I have been researching for many years. I was actually starting my masters in genetic counseling, but had to think about it because of the ethical consequences. I always thought they would draw the line way before it got to this point. Is that exactly what you are doing?
MsgId: *breakthrough(73)
Date: Wed Dec 11 22:45:29 EST 1996
From: Mod:_Marilee At: 152.172.164.36
Welcome, guest!
MsgId: *breakthrough(74)
Date: Wed Dec 11 22:47:32 EST 1996
From: Tom_Murray At: 129.22.125.21
I'm with you. The real promise of presymptomatic genetic testing is when it can be used to prevent a disease entirely, or to allow early treatment and, we hope, cure. To the best of my knowledge, there's not much evidence that testing for mutations in the genes linked to breast cancer reduces morbidity or mortality-- at least not yet. THere is one sort of case where it could make a difference--when a woman plans prophylactic mastectomies, and where she can be tested for the family mutation. There's a fifty percent chance she doesn't have it and could avoid the mastectomies.
MsgId: *breakthrough(75)
Date: Wed Dec 11 22:53:43 EST 1996
From: Tom_Murray At: 129.22.125.21
Re genetic counseling: I am arguing that a line must be drawn, for many reasons. One of them is the likelihood of a new technology, fetal cell sorting, that is no more dangerous and invasive than a simple blood tests. It turns out that there are fetal cells in the mother's peripheral circulation. All you have to do is separate them (not easy) and then do the genetic analysis. Once that technology matures, the old barriers of risk and invasiveness will crumble. We'd better have a sturdier ethic ready for that time.
MsgId: *breakthrough(76)
Date: Wed Dec 11 22:55:07 EST 1996
From: Mod:_Marilee At: 152.172.164.36
Technology is just a tool, but the more technology we get, the harder the decisions sometimes. Would you consider it appropriate to try and select for a particular hair color? What about intelligence?
MsgId: *breakthrough(77)
Date: Wed Dec 11 23:00:12 EST 1996
From: Tom_Murray At: 129.22.125.21
There's actually a very old name for that sort of quest--it's called "perfectabilism." This particular form of perfectabilism tries to avoid sorrow and disappointment by avoiding "imperfection" in whatever form it takes. As the parent of four children, I think if what you want is safety from all of the things that make human life so perilous, the last thing you should do is have children! If you have them--and I think it's a womderful thing to do--then be prepared for all the things you can't possibly anticipate.
MsgId: *breakthrough(78)
Date: Wed Dec 11 23:02:11 EST 1996
From: Tom_Murray At: 129.22.125.21
Marilee, It'e been a pleasure to chat with you. Best of luck with this online conversation.
MsgId: *breakthrough(79)
Date: Wed Dec 11 23:02:57 EST 1996
From: Mod:_Marilee At: 152.172.164.36
Thanks so much for coming tonight, Tom, and putting up with all the technological glitches. :) We really appreciate your insights into bioethics and the worth of children.
MsgId: *breakthrough(80)
Date: Wed Dec 11 23:04:06 EST 1996
From: Mod:_Marilee At: 152.172.164.36
Folks, our chat is over for tonight. :) Please join Madeleine Lebwohl next Wednesday at 9pm ET for her interview with Dr. Lee Hood of the Human Genome Project. Stay tuned afterward for open chat with me.
MsgId: *breakthrough(81)
Date: Wed Dec 11 23:04:41 EST 1996
From: Tom_Murray At: 129.22.125.21
Goodnight and good typing!
MsgId: *breakthrough(82)
Date: Wed Dec 11 23:04:51 EST 1996
From: Mod:_Marilee At: 152.172.164.36
Goodnight, and good health!
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