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To: Multiple recipients of list HUM-MOLGEN <HUM-MOLGEN@NIC.SURFNET.NL>
Subject: ETHI: 3 messages
From: Hans Goerl <GENETHICS@delphi.com>
Date: Tue, 30 May 1995 22:20:56 -0400

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.

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

Take care
all of you

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

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.

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