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AAAS RELEASES REPORT ON HUMAN GERMLINE ENGINEERING

Genetic Crossroads
September 19th, 2000

The American Association for the Advancement of Science has released a
long-anticipated report concerning human germline modification. It is
available at <http://www.aaas.org/spp/dspp/sfrl/germline/main.htm>.

The 20-person committee that prepared the report was dominated by
people supportive of human germline engineering. A superficial reading
can give the impression that the report makes a case *against* germline
modification--and this is what media headlines about it have said (See
<http://www.washingtonpost.com/wp-srv/aponline/20000919/ aponline004247_
000.htm
>; Los Angeles Times, 9/19/00, p. A6; and San Jose Mercury News,
9/19/00, p. 13A.)

Indeed, the initial sections of the report (see "Findings" and
"Concerns" below) do present many of the reasons that human germline
engineering is extraordinarily dangerous and ultimately unjustifiable.

However, a careful reading of the report shows that the expressed
concerns over safety, justice, and societal impacts are, in the end,
used to legitimize final recommendations of just the sort favored by
*proponents* of germline modification: creation of a "system of over-
sight" that would promote "a national conversation" on human germline
modification "for therapeutic and enhancement applications, and under
what conditions human research and application could proceed."

The report actually presents a list of topics that guidelines for
human germline modification should address, including "Selecting
subjects to participate" in research, "Developing an appropriate
consent process," and "Identifying the parameters of appropriate
public-private partnerships."

Nowhere in the report is the option of banning human germline modifi-
cation even considered. Nowhere are the bans that already exist in
numerous countries even mentioned.

By acknowledging the real dangers of germline engineering, the report
conveys to readers that the authors are responsible and worthy of
trust. Then, by ignoring the option of a ban, and by considering
instead a detailed set of procedural guidelines for regulating germ-
line engineering in the event it were approved, the report subtly works
to de-legitimize the intuitive rejection of germline engineering that
most people share.

Over the past decade advocates of germline engineering have worked to
establish themselves as the authoritative voices on this topic, and are
now in a position to dominate the "national conversation" for which they
call. It is critical that people who are opposed to human germline
engineering and a techno-eugenic, post-human future prepare to engage
this immensely consequential issue in the public arena.

A detailed critique of the AAAS report is in preparation. Information on
how you can obtain a copy will be included in the next newsletter.
Verbatim excerpts from the report's Executive Summary follow:

[Begin verbatim exerpt]

Human Inheritable Genetic Modifications: Assessing Scientific,
Ethical, Religious and Policy Issues

Prepared by the American Association for the
Advancement of Science, September 2000

FINDINGS

o The working group concluded that IGM [inheritable genetic modifica-
tion] cannot presently be carried out safely and responsibly on humans.

o The working group identified few scenarios where there was no
alternative to IGM for couples to minimize the prospects that their
offspring will have a specific genetic disorder.

o Guided by the theologians - mainline Protestant, Catholic and
Jewish traditions - and ethicists on the working group, the group
concluded that religious and ethical evaluations of IGM will depend
on the nature of the technology, its impact on human nature, the level
of safety and efficacy, and whether IGM is used for therapeutic or
enhancement purposes.

o To date, the private sector has played a prominent role in the
funding of somatic genetic research, raising questions about the
influence of commercial interests on the conduct of researchers and
on the scope and direction of the research. Similar questions are
likely to surface if IGM research and applications go forward.

CONCERNS

o IGM might change attitudes toward the human person, the nature of
human reproduction, and parent-child relationships. IGM could exacerbate
prejudice against persons with disabilities. The introduction of IGM in
a society with differential access to health care would pose significant
justice issues and could introduce new, or magnify existing,
inequalities.

o IGM for enhancement purposes is particularly problematic. Enhancement
applications designed to produce improvements in human form or function
could widen the gap between the "haves" and the "have nots" to an
unprecedented extent. Efforts to improve the inherited genome of persons
might commodify human reproduction and foster attempt to have "perfect"
children by "correcting" their genomes. Some types of enhancement
applications might lead to the imposition of harmful conceptions of
normality. The dilemma is that IGM techniques developed for therapeutic
purposes are likely to be suitable for enhancement applications as well.
Thus, going forward with IGM to treat disease or disability will make
it difficult avoid use of such interventions for enhancement purposes
even when this use is considered ethically unacceptable.

RECOMMENDATIONS

o Even in advance of a decision about whether to proceed with IGM, a
public body should be assigned responsibility to monitor and oversee
research and developments in IGM.

o It is important to promote extensive public education and discussion
to ascertain societal attitudes about proceeding with IGM and to develop
a meaningful process for making decisions about the future of this
technology.

o If a societal decision is made to proceed with IGM, a comprehensive
oversight mechanism should be put in place with authority to regulate
IGM applications in both the public and private sectors.

o Before IGM can proceed, there must be a means in place for assessing
the short- and long-term risks and benefits of such interventions.
Society must decide how much evidence of safety, efficacy, and moral
acceptance will be required before allowing human clinical trials or
IGM applications.

o Human trials of inheritable genetic changes should not be initiated
until techniques are developed that meet agreed upon standards for safety
and efficacy. [A long paragraph specifying those standards follows. This
section concludes. . .] If it is shown at the full genome sequence level
that the sequence of a functionally normal genome has been restored,
there will likely to no need for multi-generation evaluation.

o The role of market forces in shaping the future of IGM research
and applications should be carefully assessed to ensure that adequate
attention is paid to public priorities and sensibilities.

o Existing conflict of interest guidelines governing research should
be reviewed and, where appropriate, amended and vigorously enforced. The
guidelines should specify when a financial interest in a commercial IGM
venture is grounds for precluding an investigator's direct participation
in a clinical trial supported by that company.

[End verbatim exerpt]

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