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PROFESSIONAL
ETHICS REPORT
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| Volume
XVI, Number 3, Summer 2003 |
| Editor:
Mark S. Frankel |
Deputy
Editor: Kristina Schaefer |
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| Contributing
Authors: Kevin Alleman, Brent Garland, Bryn Lander, Crystal Liu |
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Good
Stewards or Bad Censors?
By Michele S. Garfinkel, Ph.D.
Michele Garfinkel
is a project director at the Center for the Advancement of Genomics
in Rockville, MD. Her research focuses on the societal impacts resulting
from the professional conduct of science. The opinions expressed
here are strictly her own and do not reflect the official policies
or opinion of the Center.
The
study of the “social contract” with science is well-worn ground.
Various commentators have described in remarkable detail the relationship
between scientists, institutes of science, government, universities,
industry and society as a whole.[1]
The contract, which declares that society will support (both in
principle, and monetarily) unfettered research and in return science
will contribute to the common good, has rarely been breached: the
most well-known examples tend to be the notorious, such as incidents
of research misconduct. Generally, the breaches that receive the
most attention are those of the scientists. Other breaches do occur,
but are not generally subject to public discussion, as they fade
away before real damage is done. One recent example was the bill
introduced 10 July 2003 in the House by Pat Toomey (R-PA) and Chris
Chocola (Toomey/Chocola amendment) to amend the fiscal year 2004
House version of the Labor, Health and Human Services, Education,
and Related Agencies (L/HHS) appropriation bill. This amendment
was aimed at defunding specific research projects funded through
the National Institutes of Health (NIH).[2]
Normally,
NIH funds research projects by a grant process that, first, takes
into account the scientific merit of the project—asking simply,
is this good science? This is done within a study section, composed
of a group of scientists who review, and then priority order the
grants according to their understanding of each grant’s scientific
value. This list is then sent to an overarching Council, where projects
can be judged for “social” merit as well as scientific merit. In
practice, however, Councils take the advice of the study sections,
and grants are distributed based almost solely on their scientific
merit.
What
happens, though, if money is granted in a way that specific actors
in the governance of science (for example, legislators) find distasteful?
Normally, nothing. The “social contract” dictates that scientists
be trusted to self-regulate and do good work; society will see the
benefits, and everyone is happy. Occasionally, legislators will
disapprove of specific research programs and attempt to strip them
of their funding. But individual NIH grants are rarely defunded,
again, in part because funding approval has been made by at least
two levels of reviewers.
Although
legislators do try to sculpt funding for the good of their constituents
(both by earmarking and by deleting funding), one aspect of the
Toomey/Chocola amendment was particularly noteworthy: the unusually
close vote. Despite tremendous support typically for the activities
of the NIH at all levels of government, this amendment was defeated
by the barest of margins, 210-212.
The
reaction of several scientific societies to this vote was predictable,
bemoaning the insertion of raw politics into the peer review process.
But it is unclear if there would have been any reaction to the amendment
had not the vote on it been so close. Although many leaders of these
groups expressed shock that “it came up so quickly that our leadership
hadn’t even had a chance to consider it,”[3]
some societies at least were able to alert their members, requesting
they send letters to their respective Representatives.[4]
Several of these societies anticipate the introduction of similar
amendments when the Senate takes up its appropriations bills.
Although
it takes only one fringe member of any legislative body to introduce
such legislation, the near-even vote (which was not strictly party-line)
should evoke some trepidation from those who identify themselves
as part of the community interested in public perception or public
understanding of science. The professional societies particularly
have explicit or tacit missions to educate the public about science,
which presumably includes some understanding of the modern scientific
enterprise. Part of the problem is that while much effort has been
put into making difficult scientific concepts digestible,[5]
the role of peer review in research funding has not been well explained.
Peer
review, while straightforward in theory, is a complicated enterprise
in fact, and includes many aspects beyond the review of scientific
merit alone. These additional aspects usually manifest themselves
outside of the study sections, occasionally at the Council meetings
that occur after peer review, sometimes via priority-setting exercises.
Yet it is the merit review aspects that grab the attention of scientists,
and the non-merit aspects that engage politicians. The objections
to the defunded grants make no mention of scientific merit. While
it would no doubt be easier for scientists if politicians were swayed
only by the merit of the science, these politicians would not be
doing their jobs if they unquestioningly prioritized scientific
merit over societal merit.
If
defunding actions by the legislature is a concern of the societies
and of scientific institutions generally, then the research community
needs to find ways to strengthen their arguments showing linkages
between scientifically meritorious research and the public good.
If such arguments cannot be made, then the directions of research
may need to be re-thought, both institutionally and possibly even
at the principal investigator level. Practically, NIH might want
to reconsider its longstanding objection to having non-scientists
on peer review panels, rather than compartmentalized to its Council
of Public Representatives,[6] which
has no real power to effect change. The inclusion of non-scientists
on scientific review panels has been quite successful for the Army’s
breast cancer research program[7],
allowing a different point of view to be heard early on, rather
than once funds have been committed.
This
is not to suggest that Congressional Members do not need to be cognizant
of the realities of peer review and the real successes and power
of investigator-initiated research. The introduction of the Toomey/Chocola
amendment and the House discussion of it reveal unsurprising inconsistencies
in the identification of “offensive” projects. For example, at first
glance, the selection of these particular grants seemed to indicate
a bias against the study of human sexuality. The set of four sexuality
grants deal with Asian prostitutes in San Francisco, masturbation
in older men, transgendered Native Americans, and state of mind
on sexual risk-taking. What is confusing is that these are by no
means the only grants on sexuality in the NIH database of funded
grants. A glance
at the NIH's database of funded grants suggests no discernible pattern
regarding the selection of the particular four grants selected for
defunding over other grants studying human sexuality. For example,
in fiscal year 2002 alone, 33 unique grants contain the word "sexuality."
These included "Social Context and HIV Risk Among Mexican Gay
Immigrants," "Female Sexual Arousal: Clitoral and Vaginal
Physiology," and "Sexuality, HIV/Drug in 3 Groups of Asian/Gay/Bi
Men/MSM [men who have sex with men]." Yet none of these was
singled out for defunding.
Another
clue to why the vote was so close may be the many times in the transcript
of the floor debate that Representatives told stories about constituents
seeking help, wanting more money for NIH to “find a cure” for a
terrible disease suffered by themselves or their family members.[8]
Some members of Congress (or their constituents) may believe that
only “debilitating disease” is worthy of study by the NIH, and therefore
object to other areas of research. Whether that is an appropriate
stance towards NIH research or not, such positions need to be debated
openly and honestly, recognizing that management of research at
the project level will always leave out a particular group or include
a particular group in a way that looks arbitrary, or does not seem
to display the same possibility of return on investment. To some
extent, what constitutes a “good” study will always be, to some
degree, subjective, scientific merit notwithstanding.
Although
we cannot (and would not want to) subject particular projects to
a direct vote (“vulgar democracy”), it is certainly within the realm
of legitimate governmental action, particularly as practiced by
the Congressional branch of the US government, to weigh the tradeoffs
between funding different kinds of programs within appropriations
committees (at least one aspect of “enlightened democracy”).[9] Classes
of research can certainly be excluded but these exclusions are rare
(and frequently controversial, as with human embryonic research).
The problem with the Toomey/Chocola amendment is in the arbitariness
of the actions of the amendment. In this case, although the identified
projects are few in number, the selection criteria, or lack thereof,
in identifying the research to defund are crucial.
Further, the mandate of the legislative branch with regard
to science is somewhat different than the executive: in the latter
case, funding good science, informed by peer review, is at the forefront.
Legislators, though, have a distinctly different goal: control spending
in a way that reflects their constituents’ needs. Most of the time,
these goals interleave, resulting in good science for society. But
occasionally these groups find themselves working at cross purposes;
scientists, science, and society all suffer.
A
growing unease in the research community is not attributable to
the actions of the Congress alone: there is a sense that the Executive
branch as well is moving beyond its knowledge base in its interference
in things scientific. The current Bush administration’s presumptive
transgressions have been documented by the staff of Representative
Henry Waxman (D-CA).[10]
These range from the “manipulating scientific advisory committees”
(which is a purely political, though legal, move), to “distorting
and suppressing scientific information” (including the Administration’s
statement that “more than 60” stem cell lines were available, when
it now appears to be closer to ten[11]),
to “interfering with scientific research.” As with the concerns
over the Congressional amendments, the question arises as to whether
such issues that might influence scientific research are primarily
moral issues (Toomey’s argument in his part of the amendment) or
national interest issues (Chocola’s argument). Certainly, any administration
could argue a national interest concern in virtually all of its
forays into the inner sanctums of science and these could be legitimate
areas of concern for both the legislative and executive branches.
How the executive branch deals with national interest issues will
become more important as the linkages between research and national
security become more explicit.
Although
all of the players in this particular debate professed a general
admiration of NIH and basic research, not all those with legislative
or executive power may feel that way. Basic biomedical research,
and NIH-funded research particularly, has been fairly critic-proof
for the last several decades. The close vote on the Toomey/Chocola
amendment may be an indicator of a growing frustration that 30 years,
or 60 years, of “pure, basic, unfettered research” has really not
resulted in a demonstrable payback of increased health, with a few
exceptions. This vote may
be a bellwether for a change in that unfettered status; scientists,
professional groups, and politicians who value the basically free
conduct of research science should take these recent legislative
and executive actions seriously. There must be open public discussions
regarding the actions of the government in changing the course of
scientific research. These discussions need to happen before the
fact, not after the defunding action has been taken. Ex post facto, they are merely handmaidens
to protesting perceived censorship. Public discussion optimally
can result in a sense of inclusion for all, thus minimizing the
impact of “unsuccessful” research, and helping scientists, politicians
and the public to clarify the proper roles for all the actors in
research science, if we want the “social contract” with science
to continue to accrue to the common good.
[1] For
examples, see: Michael Gibbons. 1999. “Science’s New Social Contract
with Society.” Nature 402:
C81-C84; David H. Guston. 2000. Retiring the Social Contract for
Science. Issues in Science and Technology: Summer. Available at http://www.nap.edu/issues/16.4/p_guston.htm.
[2] The relevant language was as follows: “Sec.
X: None of the funds made available in this Act for the National
Institutes of Health may be used to fund grant number R01HD043689,
R03HD039206, R01DA013896, or R01MH065871.”
[3] Ted Agres. 2003. “Politicizing research
or responsible oversight?” The
Scientist Daily News 14 July; Quotation
from Howard Garrison, Public Affairs Director, Federation of American
Societies for Experimental Biology.
http://www.biomedcentral.com/news/2003714/05
[5] Attesting to a belief by some that by making
these concepts “clear enough” lay people would, as a result, be
supportive of any given line of scientific inquiry.
[9] Philip Kitcher. 2001. Well-Ordered Science.
In Science, Truth, and Democracy.
Oxford University Press (New York), p. 117.
[10] United States House of Representatives,
Committee on Government Reform—Minority Staff, Special Investigations
Division. 2003. Politics
and Science in the Bush Administration.
www.reform.house.gov/min
[11] Elias Zerhouni. 2003. Testimony. Senate
Committee on Appropriations, Subcommittee on Labor, Health and
Human Services, and Education, Federal
Funding for Stem Cell Research, May 22 (108th Congress).
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The
Art of Regulating ART
With the release of the cloning report
in July 2002, the President’s Council on Bioethics decided to conduct
an inquiry into the pressing ethical issues associated with advances
in biotechnologies and practices associated with assisted reproductive
technologies (ART), genetics and human embryo research. To that end, the Council has been discussing
a working paper, “U.S. Public Policy and the
Biotechnologies That Touch the Beginnings of Human Life,” that examines what circumambient
societal goods and values are potentially influenced—for better and
for worse—by the increasingly converging fields of developmental and
reproductive biology, and genetic technologies.
The
Council has heard from numerous scientific and policy experts and others
who are vested in the governance of these technologies, whether by self-regulation
or by public oversight. The most recent draft paper proposes “consensus recommendations”
as guidelines to improve the monitoring and oversight of assisted reproductive
technologies. The recommendations
attempt to address concerns that the technologies and practices might
be implemented in an untoward manner, such as whether preimplantation
genetic diagnosis used to prevent X-linked genetic disease or intracytoplasmic sperm injection used for male factor infertility
will be used for the purpose of selecting the sex of the child-to-be
for reasons of family balancing. Moreover,
the paper acknowledges that concerns are raised about whether these
technologies will have an adverse affect on the women and children-to-be,
matters for which no thorough scientific study exists.
In the United
States, the multimillion-dollar infertility
industry is self-regulated and is for the most part unhampered by federal
regulations, unlike other areas of biomedicine such as the regulations
governing the protection of human participants in clinical research.
All federally funded institutions that involve human participants
in research must adhere to the strict guidelines set out under the Common
Rule (45 CFR 46). The absence
of federal regulations and public funding for human embryo research,
unlike research involving human participants, stems from the aftermath
of the 1973 Roe v. Wade decision and the government’s
reluctance to intrude into a politically sensitive issue that involves
clashing moral views over abortion and when life begins, i.e., the moral
status of the embryo. The funding
policy for such research has only been recently changed by the Bush
Administration’s announcement on 9
August 2001 to permit federal funds for research on pre-existing
embryonic stem cell colonies, but to prohibit support for research on
colonies created after the announcement.
The Council’s paper is still a work in progress,
with a final report expected by November.
That timetable was influenced in large part by uncertainty about
whether the Bush Administration would extend the Council’s charter,
due to expire at the end of November.
The uncertainty ended on September 17, when the President issued
Executive Order 13237 extending the charter effective through 30 September
2005. *KA
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EPA TAKES NEW APPROACH TO ADVISORY
COMMITTEE APPOINTMENTS
The
Environmental Protection Agency’s Science Advisory Board (SAB) recently
issued a request to the public for nominations of experts for the Bioethics
Advisory Committee (BAC), which will advise the EPA on “ethics issues
that might arise in a number of situations involving the generation
and/or use of human and animal data.”[1]
A
second stage of public input comes in the form of inviting public comment
on the short list of candidates for the BAC by posting their names and
bios on the SAB website. During the comment period (21 calendar days),
the public is asked to contribute to the evaluation of the nominees
by providing information on the candidates.[2]
These
two stages involving public input are all part of the formal process
of panel formation adopted by the EPA’s Science Advisory Board in May
of 2002. This process was designed by the Policies and Procedures Subcommittee
(PPS), created in response to concerns in a report issued by the General
Accounting Office, EPA’s Science Advisory Board Panels: Improved
Policies and Procedures Needed to Ensure Independence and Balance.[3]
The
PPS created a four-stage process, two of which involve public input,
in an attempt to address and ameliorate two main concerns:[4]
1) that the members of each panel
are independent and that the panels themselves are balanced[5]
2) that the public is properly
informed about the formation of each panel
It
may be a little premature to assess the effects of this process of panel
formation, but on the surface it does seem to have widened the scope
of public involvement. Posted on the SAB Federal Register Notices are
several requests for nominations for panelists – the Council for Regulatory
Environmental Modeling Guidance Advisory Panel and the Panel on Illegal
Competitive Advantage Economic Benefits, to name a couple.
On
the other hand, the public has no control over two other stages of the
process – the formation of the short list and the final panel selection.[6]
Thus, it remains to be seen whether the opportunity to nominate candidates
and provide feedback on nominees has significant impact on the overall
process. *CL
[3] GAO-01-536.
June 12, 2001.
[5] As stated
in EPA-SAB-EC-COM-002-003, a balanced panel is characterized by inclusion
of the necessary domains of knowledge, the relevant scientific perspectives
(which, among other factors, can be influenced by work history and
affiliation), and the collective breadth of experience to address
the charge adequately.
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MEDICAL SCHOOL SURVEYS RAISE PRIVACY CONCERNS
On July 21,
2003, Public Citizen, a public interest group, issued a letter
to the acting director of the Federal Office for Human Research Protections,
asking for an investigation into the “unethical and possibly illegal
research” conducted by the Association of American Medical Colleges
(AAMC). The research in question is the Graduation Questionnaire
(GQ), given to graduating medical students by AAMC, in partnership with
126 American medical colleges. Begun
in 1978, more than 15,000 students are now surveyed annually, with a
response rate of 91% in 2002.
The questionnaire’s stated goal is to help
medical colleges improve the quality of their programs. While Public
Citizen agrees that a GQ is useful, it argues that the survey should
be conducted in a more ethical fashion. The very nature of the questionnaire, which
includes such personal questions as student debt and views of the current
health care system, causes it to transcend education evaluation into
a broader research scope. Specifically,
Public Citizen points to the coercive nature of the GQ (students who
don’t participate are often penalized); the lack of Institutional Review
Board (IRB) involvement; and the use of its data in journal articles
without student permission.
Public Citizen argues that these three factors
put the GQ, the AAMC, and its partner medical colleges, in violation
of the Federal Policy for the Protection of Human Subjects and several
international standards related to human subjects research.
Public Citizen urges that IRBs be implemented on the College
and AAMC level, and that for students taking the questionnaire, coercion
be eliminated and information about the potential uses of the data be
disclosed.
The AAMC response, published July 23, 2003, argues that Public Citizen has fundamentally
misunderstood the nature and purpose of the survey, which solely evaluates
education programs, not individuals, and that questionnaire answers
are only released with student permission.
In addition, AAMC had already initiated an in-house IRB.
For additional information see the following:
Public Citizen’s Letter “Publication Letter
to HHS Urging a Federal Investigation of Medical Schools Conducting
Unethical Research on Their Own Students” July
21, 2003, Available online at: http://www.citizen.org/publications/release.cfm?ID=7268&secID=1158&catID=126
“AAMC Responds to Public Citizen’s Complaints
about Medical School Graduation Survey”. July
23, 2003. Available online at: http://www.aamc/org/newsroom/pressrel/2003/030723.htm
The Graduate Questionnaire homepage: http://www.aamc.org/data/gq/start/htm.
*BL
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INTERACADEMY
PANEL ISSUES STATEMENT ON HUMAN CLONING
The InterAcademy
Panel on International Issues (IAP) issued a statement on September 22, 2003, calling for a worldwide ban on human
reproductive cloning. The statement, endorsed by over sixty member science
academies from all over the world, will be presented to delegates of
the United Nations Committee on Cloning[1].
This Ad Hoc Committee was created by the
United Nation’s General Assembly in 2001[2] for
“the purpose of considering the elaboration of an international convention
against the reproductive cloning of human beings.”[3] Almost
two years later, the committee still has not issued a convention endorsing
a ban on cloning, largely in part from internal disagreements regarding
whether the ban should extend to cloning for research and therapeutic
purposes.
The IAP declaration endorsed a ban on reproductive
cloning of humans, but excludes cloning to obtain embryonic stem cells
for research and therapeutic purposes. They stated that at present,
scientific knowledge and technology are not at a point where human reproductive
cloning can be performed without significant threat to both the cloned
human and pregnant mother. Even if these barriers were overcome, they
held that strong ethical, social and economic objections would continue
to argue against human reproductive cloning.
The IAP goes on to distinguish between human
reproductive cloning and cloning for research and therapeutic purposes
– while they both involve “generating a human blastocyst via somatic
cell nuclear transfer […] the crucial difference is that the cloned
blastocyst is never implanted into the uterus”[4] in
cloning for research and therapeutic purposes. Instead, the cloned blastocyst
is used to make stem cell lines. There is a general consensus among
scientists that embryonic stem cells hold tremendous potential for medical
treatment. This consideration was key in why
the IAP, while endorsing a ban on human reproductive cloning, did not
extend it to include cloning for research and therapeutic purposes.
*CL
[1] The UN
Committee on Cloning is scheduled to meet at UN headquarters in New
York City from 29 September to 3 October 2003.
[2] Resolution
56/93 of 12 December 2001
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OMB PROPOSES INCREASED PEER REVIEW REGULATION
A proposed Bulletin released on August 29, 2003 by
the Office of Management and Budget’s (OMB) Office of Information and
Regulatory Affairs (OIRA), proposes basic standardization of the peer
review process for significant regulatory science documents (defined
as any science that is influential and relevant to regulatory policies)
across all governmental agencies. OIRA argues that peer review standardization
will introduce a minimum, uniform, government standard; ensure an independent,
unbiased, transparent process and make studies, and the regulations
that they uphold, more credible.
According to the Bulletin, agencies will
still formulate their own peer review process for most regulatory science
documents. But for studies that will be widely disseminated, have an
estimated policy impact of more than $100 million a year, or that are
deemed a priority by OIRA’s administrator, the agency will be required
to conduct a formal, independent, external peer review based on specific
guidelines outlined in the Bulletin. These include an expectation that peer reviewers
are unbiased experts, independent of the agency conducting the review,
who are given a sufficiently broad mandate and access to all necessary
information. In addition, an
opportunity must be provided for public comment.
Agencies must then consult with OIRA and the Office of Science
and Technology Policy (OSTP) regarding the planned review process before
it is adopted. For all science and technology studies that
will be disseminated in the upcoming year, agencies are required to
submit an annual summary and a peer review plan.
Critiques of the Bulletin worry that it
will increase the time needed to adopt regulations, and that more studies
will be discounted, leading to less regulation.
They argue that this will enable the private industry to lobby
more effectively to have negative studies discounted.
In addition, they see the centralization of the current peer
review system as taking power from agencies and giving it two White
House Offices, with the potential for increased political manipulation,
misuse, and mismanagement of the peer review system to advance political
agendas.
OMB is calling for public comment on the
proposed Bulletin. The deadline for comments is December 15, 2003.
For additional information see the following:
Mckinnon, John D “Regulations Face Stiffer
Review in Win for Bush Business Allies” Wall
Street Journal, Aug. 29,
2003
“Office of Management and Budget: Proposed
Bulletin on Peer Review and Information Quality,” Federal
Register, Vol.68, No. 178, pp.54023-54029
“OMB Bulletin on Peer Review: Making Science Vulnerable
to Political Manipulation,” OMB Watch, Aug.
29, 2003 http://www.ombwatch.org/article/articleprint/1771/-1/18/
“OMB Proposes Draft Peer Review Standards
for Regulatory Science,” Office of Management and Budget, Aug 29, 2003, http://www.whitehouse.gov/omb/pubpress/2003-34.pdf
Vedantam, Shankar,
“Bush would add Review Layer for Rules: Industry Cheers Science Peer-Appraisal
Plan; Critics say it will Discourage Regulation,” The
Washington Post, August 30, 2003, p. A10. *BL
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POLITICS AND SCIENCE IN THE BUSH ADMINISTRATION
A report from the
Minority staff of the House Committee on Government Reform – Politics
and Science in the Bush Administration – identifies over twenty issues
that, according to the report, have been affected by the Bush Administration’s
politicization of science. These include such issues as global warming,
abstinence-only education, and environmental health. The report charges
the Bush Administration with manipulating scientific advisory committees,
distorting and suppressing scientific information, and interfering with
scientific research.
More specifically, the staff report charges
that the Bush Administration has been manipulating scientific advisory
committees by appointing unqualified persons with industry ties and/or
ideological agendas, stacking advisory committees, and opposing qualified
experts. For example, in 2002, the Department of Health and Human Services
proceeded to replace 15 of the 18 members of the National
Center for Environmental
Health’s Advisory Committee. Several of the new members appointed have
close ties to industries that have opposed regulation in public health
and environment.
One might claim that a newly elected President,
chosen in part because of his policy objectives, should be expected
to make appointments to reflect those objectives. However, according
to the staff report, the Bush Administration goes “far beyond the typical
shifts in policy that occur with a change in the political party occupying
in the White House.”[1]
In regards to breast cancer, the Bush Administration
is charged with distorting information to “misleadingly portray abortion
as a risk factor in breast cancer.”[2] Prior
to the summer of 2002, the National Cancer Institute (NCI) held the
position that most current studies had generally concluded that there
was no association between breast cancer and spontaneous or induced
abortions.[3] However,
in the fall of 2002, the Bush administration altered the NCI website
to state:
Some studies have reported
statistically significant evidence of an increased risk of breast cancer
in women who have had abortions, while others have merely suggested
an increased risk. Other studies have found no increase in risk among
women who had an interrupted pregnancy.[4]
But contrary to this charge made by the
staff report, some have argued that it was not President Bush, but NCI’s
website in the summer of 2002 that distorted information. The Coalition
on Abortion/Breast Cancer believes that there is overwhelming evidence
supporting a positive relationship between the two, and hence applauded
the removal of what they called an “inaccurate web page.”[5]
In the midst of all this controversy, one
tenet holds true – that potential abuses of science that are not consistent
with providing objective and reliable technical information to our policy
makers must be guarded against – and this holds true regardless of whether
or not one agrees with the accusations brought forth by the staff report.
*CL
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AAAS
HELPS BRING "GALILEO" TO THE STAGE
AAAS
and the Studio Theatre in Washington, DC, are joining forces to promote
the premiere showing in the United States of The Life of Galileo,
a Bertolt Brecht play adapted by playwright Sir David Hare. In addition
to organizing two matinee performances for Washington, DC high school students,
AAAS is sponsoring a special matinee for local scientists and their families.
This special performance takes place on Sunday, December 7, at 2:30pm, followed
by a reception with the actors. To learn more, visit http://www.aaas.org/spp/galileoplay.
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AAAS LAUNCHES NEW
PROJECT IN SCIENTIFIC FREEDOM AND NATIONAL SECURITY
Since 9/11, finding the right balance between national security and maintaining
the openness needed for the advancement of science has become more challenging
than ever. A new project launched by the American Association for the
Advancement of Science (AAAS) intends to address this concern by analyzing
the changing relationship between science and national security in five
main areas: visa policies and practices, select agent rules, federal grants
and contracts, scientific publication policies, and "sensitive but unclassified"
information. Through a series of data gathering techniques, AAAS will
collect information from scientists and engineers whose professional work
has been affected by post 9/11 policies, compiling the results into a
database for documentation and analysis. In you have been affected by
post 9/11 policies or know of a colleague who has, please visit the project's
website at http://www.aaas.org/spp/post911.
*BL
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SOCIETY FOR RESEARCH ADMINISTRATORS ESTABLISHES SPECIAL
INTEREST GROUP
The Society for Research Administrators (SRA) is establishing a Responsible
Conduct of Research Special Interest Group. The RCR SIG will have its inaugural
meeting at the Annual SRA meeting in Pittsburgh on Sunday, October 19, 2003.
For more information, contact Ed Gabriele at efgabriele@earthlink.net. |
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Resources |
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GROW OLD ALONG WITH ME?
A review of Merchants
of Immortality: Chasing the Dream of Human Life Extension,
by Stephen S. Hall
By
Brent Garland
When Robert Browning wrote
“Grow old along with me!
The best is yet to be,
The last of life, for which
the first was made.”
he pretty much precluded himself from a
job at Geron, Osiris Therapeutics, or any
of the host of other companies chronicled in Stephen Hall’s account
of modern day life-extension research. The book focuses on those scientists
and companies that are seeking to understand the mechanisms of aging
and, in many cases, retard or reverse such effects, and it is a fascinating
read.
Hall’s book is for the general reader, and
contains no technical scientific content. Yet, the book is still likely
to be of great interest to scientists, as it does an excellent job of
reporting on the cultural, political and social forces that influence
not only how research is done, but whether it is done at all. Along
the way, Hall gives serviceable accounts of the scientific concepts
involved, and includes a veritable Who’s Who of scientists and entrepreneurs
in the field, including Leonard Hayflick, Elizabeth Blackburn, Roger Pedersen, Cynthia Kenyon,
John Gearhart, Irving Weissman, Ali Hemmati Brivanlou, Thomas Okarma, and the seemingly omnipresent Michael West.
The book begins with the discovery of the
Hayflick limit in cell biology, leads into the quest for telemorase, and hurdles through the present day biotech frenzy
surrounding stem cells, therapeutic cloning, and regenerative therapies.
The common link between many of the tales in Merchants of Immortality is the involvement of Michael West, the controversial
and entrepreneurial scientist who has funded a substantial amount of
research personally, through a company he founded, Geron,
and through the company he currently heads, Advanced Cell Technology.
Hall spends a substantial amount of the book examining the role West
has played in both advancing the science and engendering controversy
about it as well.
Hall does not focus on the scientific players
alone. Also captured in Merchants
are the tensions that arise among various groups: academia and industry;
scientists and politicians; and anti-abortion activists and research
advocates, among others. Hall identifies many key players in the national
ethics dialogues surrounding stem cell use, human cloning, and the fundamental
issue of whether seeking to extend the human life span is an ethically
acceptable goal for science, and recounts their various roles in the
still unfolding debates.
Overall, Hall
has produced a provocative book that will serve as an excellent primer
for those who want to acquaint themselves with the current scientific
questions and societal controversies surrounding human life-extension.
For those unfamiliar with the policy aspects of science, the
sections of the book dealing with President Bush’s stem cell policy
and the Congressional hearings on cloning will offer a narrow glimpse
into the policy arena. For people interested
in the ethical issues raised by life-extension research, Merchants of Immortality provides a rich
background of context in which to examine the issues involved, as well
as for considering how those questions are addressed and discussed at
a national level.
Hall, Stephen S. Merchants of
Immortality: Chasing the Dream of Human Life Extension. Houghton
Mifflin, 2003. $25.00.
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BLOODLINES, A PBS DOCUMENTARY ON GENETIC AND REPRODUCTIVE TECHNOLOGIES,
NOW AVAILABLE
The Bloodlines:
Technology Hits Home project is a coordinated PBS documentary,
web site and (free) discussion guide now available to educators and
professionals. Produced by award-winning Backbone Media, Bloodlines uses actual legal cases to explore
how genetic and reproductive technologies challenge many of our fundamental
beliefs about what it means to be human, to be a parent, to inhabit
our bodies, and to have rights.
We seldom have the opportunity--or the
tools--to explore systematically the relationship between our gut-level
feelings and our fundamental beliefs.
The intersection of biotechnology and the law, however, creates
a unique and compelling chance to do just that.
Through actual cases, Bloodlines helps articulate the direct
relationship between what we feel, the fundamental, ethical and philosophical
principles embedded in those feelings, and the legal institutions
and social relations we have built to honor them.
In Bloodlines,
broader social and ethical dramas emerge from very closely observed
local one: a technology patent case raises the very basic question
of what constitutes a human being; a conflict involving reproductive
technology highlights the fundamental problem of who is a parent;
an employment discrimination suit challenges our ideas about who has
a right to our bodies and the meaning of "normal."
Bloodlines will be the focus of a special
symposium at the AAAS 2004 Annual Meeting (Seattle, February 15).
Bloodlines is on the web at http://www.pbs.org/bloodlines, and copies
of the film and the free discussion guide are available by emailing
education@backbonemedia.org.
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JOINT EFFORT RELEASES MODEL CURRICULUM IN ETHICS
AND PUBLIC HEALTH
A collaborative effort among the Association of Schools of Public Health
(ASPH), the Health Resource Services Administration (HRSA) and The Hastings
Center, with additional support from the Robert Wood Johnson Foundation,
has resulted in a model curriculum for teachers of ethics in schools of
public health and professional public health settings. The curriculum
is designed to enhance and encourage thoughtful, well-informed and critical
discourse of the ethical issues inherent in the public health field. The
curriculum consists of self-contained modules, each written by a leading
expert in the area. The curriculum, in its entirety or module-by-module,
can be downloaded free of charge at http://www.asph.org/document.cfm?page=723.
For a hardcopy, or more information, contact Monica Stadtler at mstadtler@asph.org.
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Conference
-- Gonzaga University will host the 3rd
Annual Engineering Ethics Conference at the Astor Crowne
Plaza Hotel in New Orleans, LA
on October 15-17. The Registration deadline for the conference, titled
"Ethics and Social Responsibility in Engineering and Technology,
Building Ethics into Professionalism," is October
1, 2003. For more
information, visit http://www.gonzaga.edu/engineeringethics.
Conference -- AAAS, the American Bar Association,
and the American Medical Association are co-sponsoring a two-day
conference on genetics and the law on October 2-3, 2003 in Chapel Hill,
North Carolina. The conference will consist of eight plenary sessions
over two days. The opening session will be a keynote address by Dr.
Francis Collins, Director of the National Human Genome Research Institute,
followed by a legal keynote session featuring Judge Andre M. Davis (United
States District Court for the District of Maryland) and Professor Lori
Andrews (Chicago--Kent College of Law). More information is available
at http://www.abanet.org/scitech/genome.
Workshop
-- On October 14-15, 2003, The National Academy of Engineering is
holding a workshop on "Emerging Technologies
and Ethical Issues." The
workshop is free, but advance registration is required.
An audio simulcast of the workshop will also be available for
those unable to attend. For more details, visit http://www.nae.edu.
Conference
-- The Center for Academic Integrity's
International Annual Conference will be held October 17-19, 2003 at the University
of San Diego. The theme is "Integrity in our Institutions:
Leadership, Courage, and Commitment." For more
information, call 919-660-3045, or visit http://www.academicintegrity.org.
Call
for Papers and Meeting -- A special session for the presentation
of undergraduate papers will be held at the Annual
Meeting of the Association for Practical and Professional Ethics,
February 26-28, 2004. The deadline for submission of papers is October 30, 2003. The meeting registration fee will be waived
for those students whose papers are accepted.
More information is available at http://www.indiana.edu/~appe.
Fellowships
-- Applications for the 2004-05 Faculty Fellowships in Ethics at the
Harvard University Center for Ethics and The Professions are now being accepted. Applicants with a professional degree in law,
medicine, business or government, or a doctoral degree in philosophy
or related discipline are encouraged to apply. The application deadline
is December 4, 2003. For more information,
visit http://www.ethics.harvard.edu.
Fellowships
-- The University Center for
Human Values at Princeton University is currently accepting applications
for the 2004-05 Laurence S. Rockefeller Visiting Fellowships.
Those awarded the fellowship will devote a year in residence
at Princeton, writing on ethics and human values.
Applications are due December
5, 2003, and recipients will be announced on March 15, 2004. For more information
visit http://www.princeton.edu/values.
Conference
-- PRIM&R's 2003
Annual IRB Conference will be held from December 6-7, 2003 at the Marriott Wardman
Hotel in Washington, DC. The focus of this year's conference is "Reclaiming
the Belmont Principles for Human Research Protections: Looking Back
to Move Forward." Just prior
to the conference, on December 4, PRIM&R will offer eight educational
programs for beginners or those in need of a "refresher" in
research regulations and ethics. The
Applied Research Ethics National Association (ARENA) will hold its 18th
Annual Meeting on December 5. For
more information, visit www.primr.org.
Fellowships
-- The Institute for Advanced
Studies on Science, Technology, and Society (IAS-STS) is offering
5 grants for fellowships at the IAS-STS in Graz,
Austria from October
1, 2004-June 30, 2005. The grants are dedicated to the following
subject areas: Gender, Technology and Environment; Ethical, Legal and
Social Aspects of Genome Research and Biotechnology; and Technology
Studies and Sustainability. The deadline for applications is January 15, 2004. Forms and information are available at http://www.sts.tu-graz.ac.at.
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