Health and Biotech
Issues Raise New Issues for Convention
June 13, 2003
by Jane Lantz
A new topic on the agenda for General Convention
is consideration of the ethics of the new genetics. Rapidly expanding
genetic capabilities and sophisticated technologies give patients
and clinicians powerful tools with which to address genetic disorders.
Ethical use of these tools, however, carries considerable responsibility.
The scope and complexity of the HIV/AIDS pandemic
continue to increase, both nationally and internationally. Life-extending
drug therapies have been developed but are not available to many
of the most needy HIV/AIDS patients, especially in the developing
world.
The Task Force on Ethics and the New Genetics
was created by the Executive Council after General Convention 2000
to address concerns raised by the new genetics.
"Stem cell research" is a term that entered the
public consciousness during the past three years. Scientifically,
ethically, and emotionally complicated, human embryonic stem cell
research offers the promise of alleviating symptoms in and potentially
curing patients with disorders such as Parkinson's disease, Alzheimer's
disease, and spinal cord injuries.
The source of these stem cells remains controversial,
however. Resolution A014 suggests that early embryos remaining after
in vitro fertilization procedures are concluded could morally be
donated for embryonic stem cell research. This resolution contains
the caveats that the embryos not be deliberately created for research
and that they not be obtained through sale or purchase.
According to task force member Dr. Cynthia B.
Cohen, the key question is how best to use embryos remaining at
fertility clinics. "We cannot possibly fertilize them all to bring
forth children. Should we discard them, keep them frozen forever,
or use them to try to heal those afflicted with devastating conditions?
It seems a beneficial use of them to seek cures for diseases such
as Parkinson's and Alzheimer's that seriously affect many of God's
people."
Cohen summarized this aspect of the work of the
task force, saying, "We concluded that it is in keeping with our
call to heal the afflicted to use these remaining embryos in promising
research." The task force took a "conservative and balanced approach,"
Cohen believes, stressing this resolution "does not recommend that
embryos be created for this research."
Gene therapy
In addition to embryonic stem cell research,
the task force considered gene therapy, two forms of which have
emerged in recent years. The first - somatic cell gene therapy -
introduces cells into the non-reproductive cells of the human body.
The other - germ-line intervention - targets genes in the early
embryo.
Resolution A011 considers experimental somatic
cell human gene transfer acceptable for therapeutic purposes to
treat or prevent disease. Germ-line interventions should not be
used, however, until they are proved safe and effective across generations.
Both forms of research require careful oversight, and the task force
further recommends that the National Institutes of Health Recombinant
DNA advisory committee be placed under the aegis of another federal
agency that is independent of federal agencies that directly fund
biomedical research.
Children are trusts and gifts from God, and sick
children are among the most vulnerable patients. Resolution A012
resolves that genetic testing and gene therapy be conducted in children
only if the procedures are clearly in a child's best interest. The
resolution further posits that human reproductive cloning - that
is, the deliberate production of genetically identical individuals
- is not morally acceptable at this time because it constitutes
an unsafe form of experimentation on children.
Education is key to understanding all these issues.
During General Convention, a new book will be released summarizing
the work of the task force, A Christian Response to Our Genetic
Powers. The Executive Council commends it to clergy, seminarians,
and laity alike to enhance their understanding of the expanding
range of genetics-related issues and choices offered throughout
life (A013).
The HIV/AIDS pandemic
Despite efforts to prevent infection with the
human immunodeficiency virus (HIV), through both education of vulnerable
populations and research to create a vaccine, the disease continues
to have vast social and economic effects, across all age, color,
and gender lines, both in the United States and internationally.
Two major concerns emerged from the meetings
of the Standing Committee on HIV/AIDS during the triennium: availability
and accessibility of costly drug treatments and redoubled education
efforts to reach populations of people particularly at risk .
Resolution A018 concerns the inclusion of women,
African Americans, and other people of color in clinical drug trials
for new HIV medications and studies of the efficacy of new HIV/AIDS
medications. Furthermore, the committee recommends (A020) that the
Episcopal Church urge US pharmaceutical companies, the US Food and
Drug Administration, and the US Patent Office to relinquish drug
patent rights to pharmaceutical companies in developing countries.
Those pharmaceutical companies could then develop and distribute
generic versions of these powerful medications and make them available
to HIV/AIDS patients in developing countries.
The stigma associated with AIDS and the reluctance
to discuss matters of human sexuality greatly hinder prevention
education efforts. The committee also recommends a strong stance
on HIV/AIDS prevention education for everyone, especially in the
African American communities of this country (A021). The message
should be carried to African American members, and churches with
larger populations of African Americans should take the lead, to
ensure that all methods used to prevent the spread of HIV are taught
in school curricula, church school curricula, and other education
settings.
Racism, cultural stigma, and homophobia afflict
many who silently endure HIV/AIDS. Much can be learned and communicated
to others because of these patients' stories. The committee hopes
to continue and expand its work for the next triennium (A019).
Resolution A018 concerns the inclusion of women,
African Americans, and other people of color in clinical drug trials
for new HIV medications and studies of the efficacy of new HIV/AIDS
medications. Furthermore, the committee recommends (A020) that the
Episcopal Church urge US pharmaceutical companies, the US Food and
Drug Administration, and the US Patent Office to relinquish drug
patent rights to pharmaceutical companies in developing countries.
Those pharmaceutical companies could then develop and distribute
generic versions of these powerful medications and make them available
to HIV/AIDS patients in developing countries.
The stigma associated with AIDS and the reluctance
to discuss matters of human sexuality greatly hinder prevention
education efforts. The committee also recommends a strong stance
on HIV/AIDS prevention education for everyone, especially in the
African American communities of this country (A021). The message
should be carried to African American members, and churches with
larger populations of African Americans should take the lead, to
ensure that all methods used to prevent the spread of HIV are taught
in school curricula, church school curricula, and other education
settings.
Racism, cultural stigma, and homophobia afflict
many who silently endure HIV/AIDS. Much can be learned and communicated
to others because of these patients' stories. The committee hopes
to continue and expand its work for the next triennium (A019).
Web Sites
Task Force on Ethics and the New Genetics - http://www.episcopalchurch.org/gc/ec/ccs/eceng/default.html
Stem cell research - http://www.nih.gov/news/stemcell/index.htm
or http://www.nih.gov/news/stemcell/primer.htm
National Institutes of Health Recombinant DNA
advisory committee - http://www4.od.nih.gov/oba/RAC/RAC_FAQs.htm
Human reproductive cloning -
http://www.nap.edu/books/0309076374/html/
Executive Council Standing Commission on HIV/AIDS
- http://www.episcopalchurch.org/gc/ec/ccs/echa/default.html
Human immunodeficiency virus (HIV) - http://www.sis.nlm.nih.gov/aids/
or http://www.niaid.nih.gov/publications/aids.htm
or http://www.cdc.gov/hiv/dhap.htm
or http://www.unaids.org/
or http://www.who.int/health-topics/hiv.htm
Episcopal News Service
Jane Lantz is a medical editor at the Mayo Clinic in Rochester,
Minnesota. She is a member of the ENS news team at the 74th General
Convention in Minneapolis.
|