HUM-MOLGEN archive: ETHI: 3 messages

This ETHI message has 3 subheadings: 1: An introduction from Dr Gregor Wolbring, a biochemist with a strong interest in ethical issues surrounding the disabled and their treatment. Dr Wolbring's contribution should serve to remind all that decisions about widespread use of genetic technologies cannot be made without prolonged consultation with those in the disabled population. 2. A series of inquiries from CL Horn, who is primarily concerned with the rights of individuals and peoples whose genetic information is used in connection with the HGP and Diversity Project. 3. An update and request from the editor for further information on DNA banking and the military. 1. From: Gregor Wolbring <gwolbrin@ACS.UCALGARY.CA> Hi everybody, I thought I would introduce myself so that people can evaluate to whom I may be of use. My name is Gregor Wolbring and I am a research scientist in the Medical Biochemistry dept. of the University of Calgary. Beside that I am a thalidomide and wheelchair user. I am mainly interested in the human genetic issue from the human rights and disability rights viewpoint. I am member of the Human Genetics Committee of the Council for Responsible Genetics in Cambridge,Mass, on the board of the Canadian Disability Rights Council on the Human Rights Committee of the Council of Canadians with Disabilities. I am also an advisor to the Little People of America on genetics and will be developing positions on the topics of genetics, genetic testing, eugenics, euthanasia and assisted suicide and enhance the debate on these topics in the Canadian disability community. I am also still connected to the German anti euthanasia forum and to the BBC in England with whom I produced a film against eugenics and the killing of newborn disabled. I give frequently presentations (also as a guest lecturer at universities ) on how the new technologies are changing the perception of society, especially feminists towards disabled people. Dr Gregor Wolbring gwolbrin@acs.ucalgary.ca Take care all of you Gregor 2. From: Cynthia Lea Horn <clhorn@cats.ucsc.edu> Subject: Re: patents I would like information, which does not have to be from a scientific source, I just have no idea who the audience is- therefore I do not know if my questions are appropriate. I realize that there is a fair amount of indigenous resistance to the Human Genome Diversity project. Although this sort of DNA collecting has been going on for years and the project intends to safeguard property rights and provide open access to the data collected, the attempt to have a global unification of scientists and universities to collect samples from indigenous people (with a particular emphasis on "endangered" populations) has provided the opposition an opportunity to organize themselves. From what I know however, it seems like the HGDP is not the appropriate target. Since the HGDP would be partially gov't funded (the initial funding was by DOE,NIH, and NSF) they would have to stick to standards of informed consent, which are intended to protect the rights of research subjects. However private genomic companies have no obligation to follow informed consent guidelines, ie, tell their sample individuals that there is some potential benefits to the subjects from the research. Potential benefits of say, royalties from money recieved via patent compensation. As with ethnobotany, the extraction of native plant matter in order to create marketable products, appropriate royalties are not funneled back to the community where the plant was taken from. The Biodiversity COnvention decided that plant matter belonged to the country in which it originally lived (or was taken) from. Although there are no rules re compensation, some companies (ie Shahman Pharm in SF) are giving a percentage back to the plant-host country. Of course they are simply 'greening' their image but they have started a trend that makes standard ethnopharmacy procedures seem to be 'bad' or 'unethical' business. What about genes? Do people have a right to expect compensation or financial benefits from their genes? The case of John Moore in 1984 set the precedent that he did not have a right to any of the profits won by his cell line which contained useful proteins. However, I suspose my question involves whether or not there are current considerations re patent law involving indigenous peoples genes without proper consent, and if genomics companies are making any moves to give back to the populations that they profit from. Other general questions: Do religious organizations appear to hold any real threat to biotech companies that profit on the "patenting of life"? What are the possibilities surrounding genetically based biological warfare? Does anyone know anything about a move to develope a legal theory of "constitutional personhood" that can be applied to genetically engineered species? 3. An update on Military DNA banking: from: genethics@delphi.com (Hans Goerl) Last week a military judge dismissed the court martial charges against two US Marines who had refused to give blood samples for the US military's DNA Banking project. The announced reason for the project is to make identification of casualties more accurate. The dismissal was on technical grounds: apparently the Marine Corps was in such a hurry to get the program going that they ignored some of their own regulations. The two Marines are still seeking an injunction that would stop the entire program. A hearing is scheduled in July. In an earlier message about this program I asked if anybody could provide an answer as to how much more accurate this type of identification is than identification by comparison to ascending, descending or collateral relatives of the presumed deceased. Since genetic paternity testing is accurate enough to be admissible in all courts in the United States, it seems to me that this expensive, high-tech military program may not substantially increase the accuracy of casualty identification. Moreover, genetic identification of victims without pre-existing blood samples is already being used in Bosnia,and has been used in mass grave situations in South America and elsewhere. The very small chance that a missing soldier will have no living relatives may not justify the substantial expense, invasion of privacy and potential for misuse that the US Military program creates. I would like to hear from anybody who is familiar with the miltary program or anybody who can provide a statistical comparison of the two methods.