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November, 1999
In 1995, the American Association for the Advancement of Science (AAAS)
established a Program of Dialogue Between Science and Religion (renamed
in 1999 as the Program of Dialogue on Science, Ethics, and Religion) in
order to improve communication and understanding between the two fields.
Since the Program's creation, several dialogue meetings have been held
to explore the spectrum of religious and scientific thinking on issues
related to advances in our knowledge of genetics and to promote thoughtful
dialogue and a search for common understanding of their ethical, theological,
and social implications.
Out of these meetings, there has emerged a genuine, collective concern
about the possible discriminatory uses to which genetic information may
be put, particularly in those cases where a genetic disease or a predisposition
to disease is identified. This is a matter of considerable public concern
in the context of health insurance and access to medical care. The timing
seems right for voices in the scientific and religious communities to
join with others in addressing these matters. A Dialogue Group began meeting
in 1996 to consider these specific issues. The Group's members include
academic scientists, ethicists, and theologians, religious leaders of
different faiths, and representatives from consumer and patient advocacy
groups, government, and the pharmaceutical and biotechnology industries.
The following Statement is a product of the Group's dialogue on genetic
discrimination in health insurance in those instances where there is a
predisposition to disease without a diagnosis of a specific illness.
The power and potential of predictive genetic tests is the knowledge
they provide. It is important to recognize that such knowledge is probabilistic
and must be properly understood not only by individuals being tested,
but also by family members, employers, schools, insurers, and legal and
medical institutions. The AAAS Dialogue Group reaffirms the great value
of genetic research. However, the knowledge gained is sometimes a double-edged
sword. On the one hand, knowledge of one's predisposition to a genetic
disorder opens up the possibility of prevention or treatment of disease.
On the other hand, the results of genetic testing could be used to classify
people according to specific genotypic characteristics that may subject
them to discrimination and stigmatization as individuals and/or members
of a group. Health insurance is one venue in which genetic discrimination
might occur. People who undergo genetic testing and are found to be at
risk for a disease or condition could have the scope of their health insurance
coverage restricted, or could be forced to pay exorbitant premiums to
retain their insurance. Others might refuse to undergo testing out of
fear of discrimination. Still others might decline participation in research
studies for fear that the information gained through genetic testing would
be used against them by insurers. Neither threats of nor actual discrimination
based on genetic information should be allowed to impede access to therapies
based on the discoveries of such genetic research or the ability and willingness
of persons to participate in critical studies.
The AAAS Dialogue Group believes that science and religion can make useful
contributions to the public discussion of these issues. Its members embrace
five principles relevant to these discussions: (1) that our political
and religious traditions recognize all humans as beings of equal worth
and inherent dignity, and these traditions should not be undermined by
genetic differences; (2) that individuals should be able to gain access
to information about their own genotypes; (3) that individuals may protect
themselves against discrimination by controlling access to information
about their genotypes; (4) that society, in pursuit of the common good,
has a responsibility to protect citizens against the misuse of genetic
information; and (5) that individuals and society should support research
in genetics that, using legitimate means, aims to alleviate suffering
associated with illness.
We have elaborated upon these principles with respect to current policy
debates on the uses of predictive genetic test results in health insurance,
and present these ideas below:
- We acknowledge the universal nature of genetic variation. As a consequence,
we all have an interest in ensuring that genetic information is not
used to discriminate against or otherwise bring harm to any individual.
The information should only be used to enhance, not undermine, the quality
of one's life.
- We recognize the importance of research in developing effective remedies
for incurable and untreatable diseases and the great value of contributing
to the bank of scientific knowledge.
- We urge the adoption of policies that ensure opportunities for people
to participate in research studies and clinical trials without fear
that the information generated by their participation will be inappropriately
disclosed and adversely affect their health insurance status or that
of their families, either as individuals or as members of a particular
group.
- We urge that identifiable medical information, which may in some instances
include more than a person's name, not be disclosed without a person's
prior authorization except in accordance with applicable law. Patient
confidentiality policies should recognize that medical information and
genetic information are inextricably linked. Public policy should not
perpetuate unscientific and artificial distinctions between the two.
- We support distinguishing anonymous medical information from patient/subject
identifiable information in order to protect individuals' rights while
furthering promising research. The anonymized information should be
freely accessible for legitimate and ethically approved research purposes,
while identifiable information should be subject to more restrictive
requirements for gaining access.
The AAAS Dialogue Group offers this Statement as a contribution to the
on-going public debate in the hope of protecting Americans from discriminatory
practices in health insurance based on the use of genetic information
produced by predictive testing. We realize that the positions reflected
in this statement raise critical challenges for our health care system
and insurance providers, such as that of adverse selection, but we call
upon the scientific and religious communities - indeed, on all people
of good will - to bring an informed understanding and a generous heart
to this debate. Both public policy and justice are better served if public
discourse on these issues is scientifically grounded and if people appreciate
the promise of genetic knowledge and the human consequences of its uses.
Signatories*
Carol Isaacson Barash
Principal, Genetics, Ethics & Policy Consulting
Audrey R. Chapman
American Association for the Advancement of Science
Ronald Cole-Turner
Pittsburgh Theological Seminary
Frank C. Dukepoo (Deceased)
Northern Arizona University
Mark S. Frankel
American Association for the Advancement of Science
Jaydee Hanson
United Methodist Board of Church and Society
Mark J. Hanson
Missoula Demonstration Project (formerly at The Hastings Center)
E. Virginia Lapham
Georgetown University
Wendy L. McGoodwin
Council for Responsible Genetics
Bernadine McRipley
Presbyterian Church (USA), Washington, DC
C. Ben Mitchell
Trinity International University (formerly at the Southern Baptist Theological
Seminary)
Pilar Ossorio
University of Wisconsin at Madison
Ted Peters
Center for Theology and the Natural Sciences
Karen Rothenberg
University of Maryland School of Law
Martin Siegel (Rabbi)
Institute for Behavioral Health and Spirituality
Suzanne (Tomlinson) Pattee
Cystic Fibrosis Foundation (formerly at the Biotechnology Industry Organization)
Robert Wachbroit
University of Maryland Institute for Philosophy & Public Policy
*The listing of affiliations is for informational purposes only; it does
not necessarily mean endorsement by any organization listed.
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