HUM-MOLGEN archive: ETHI: 2 messages

This ETHI message has two sections. 1. Excerpts from a speech by President Clinton on Monday July 14 2. An observation/question about what it is that makes us "human". The ETHI section has been quiet this Summer (my apologies to our Southern Hemisphere subscribers). We welcome any challenging questions, interesting observations, calls for assistance or reports about the social, legal, psychological, philosophical or teleological implications of genetics. Our subscribers come from 64 countries and hundreds of cultures, each of which is or will be affected in different ways. Hans Goerl ETHI editor ************************************************************************* 1) Excerpts from remarks by President Bill Clinton in announcing his support for legislation prohibiting genetic discrimination by health insurers in the US. THE PRESIDENT: "The remarkable strides that we have seen in genetic research and testing are so important to every American family. Chances are, every family represented in this room in our lifetime will have a child, a grandchild, a cousin, a niece, a nephew somehow benefited from the work of the Human Genome Project, which seemed nothing more than an intellectual dream just a few years ago. And one of the things that we have to do is to make sure that every American family has a chance to benefit from it." . *********** "And as with every kind of decision like this, there is always the possibility that what we learn can not only be used but can be misused. And in all of this era of scientific discovery, there is probably no greater promise for use or for misuse than in the area of genetic testing. Used in the right way, obviously it has the chances to save millions of lives and revolutionize health care. And I am proud of our aggressive support for the Human Genome Project." "But it's also clear that it is wrong for insurance companies to use genetic information to deny coverage. It's happened before. It happened in the 1970s with some African Americans who carried sickle cell anemia. And it can happen in many other ways. An enormous number -- percentage of American woman get breast cancer at some time during their lives. An enormous percentage of American men get prostate cancer at some time during their lives. There are other kinds of medical problems that occur with increasing frequency and that we'll see more and more as we grow older as a population. And now, we see the consequences already of this kind of discrimination. It's wrong when someone avoids taking a test that could save a life just because they're so afraid that the genetic information will be used against them. And too many women today fear that that will happen when they decide to test or to not be tested to see if they carry the gene for breast cancer. Now, this kind of discrimination is -- really it's more than wrong, it's a life-threatening abuse of a potentially life-saving discovery. And I can't help commenting that in the United States it is a direct consequence of the fact that we are the only advanced country in the world that has chosen to finance the health care of our citizens through a private insurance system that is completely optional and does not cover every one. (Applause.) So that to be fair, the insurance companies themselves face some dilemmas that can only be fixed by the law, by a restatement of the public interest, so that none are treated differently from others if they make the decision to do what is morally right. And I think that's important to point out. I tried to fix it once and took a lot of criticism, but I'm not -- (laughter) -- I'm not ashamed that I did. If I could fix it tomorrow, I would fix it tomorrow, because this is not right. (Applause.) But we have done what we could to try to, step by step, change this structure. A year ago, we took the first step when Congress passed and I signed the Kennedy-Kassebaum bill, which prohibits group health plans from using genetic information to deny coverage, and today my administration is sending legislation to Congress that will ban all health plans, group and individual, from denying coverage or from raising premiums on the basis of genetic tests. It will prohibit all health plans from disclosing genetic information that could be misused by other insurers. But it will protect researchers' ability to make the best use of this vitally important tool." ********** "But what we're here today to say is something very simple and yet profound. We cannot afford to let our progress either in science or in extending health care to the American people to be undermined by the misuse of what is a miracle of genetic testing. Americans should never have to choose between saving their health insurance and taking tests that could save their lives. With these efforts, we will ensure at least that no American ever has to make that choice again. Thank you very much." **************************************************************************** 2) Sender: Bob Resta <bresta@swedish.org> Recently, a team of scientists reported the results of mitochondrial DNA analysis of the original Neanderthal specimens. The Neanderthal DNA was compared to mitochondrial DNA from modern humans from 5 continents. The Neanderthal DNA sequence was significantly different from modern human mitochondrial. Based on this DNA difference, the researchers concluded that Neanderthals branched off from the hominid line about 550,000-700,00 years ago, before modern humans branched off. While I recognize the value and strength of modern biology's genetic definition of species, isn't this the quintessential example of humanity being defined by DNA? The paleoarcheological evidence suggests that Neanderthals buried their dead with elaborate ceremony and a concept of the afterlife, that Neanderthals produced sophisticated art, complex tools, had an intricate social order and in all other aspects acted indistinguishably from humans. How do we judge people - by their DNA or their behavior? Robert Resta Center For Perinatal Studies Swedish Medical Center Seattle, WA USA The opinions expressed here are not necessarily the opinions of Swedish Medical Center or the Center for Perinatal Studies.