wfn.org | Episcopalians: Health and biotech issues raise new issues for convention

[dmack@episcopalchurch.org]

June 13, 2003

2003-138

Episcopalians: Health and biotech issues raise new issues for 
convention

by Jane Lantz

(ENS) 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).

------

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
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/
http://www.niaid.nih.gov/publications/aids.htm
http://www.cdc.gov/hiv/dhap.htm
http://www.unaids.org/
http://www.who.int/health-topics/hiv.htm

--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.