Health and biotech Issues at General 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).

Task Force on Ethics and the New Genetics :

Stem cell research :

National Institutes of Health Recombinant DNA advisory committee:

Human reproductive cloning:

Executive Council Standing Commission on HIV/AIDS:

Human immunodeficiency virus (HIV):

--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.


The Ethics of New Genetics

The Task Force on Ethics and the New Genetics was created after General Convention 2000 to deal with such
ground-breaking issues as genetic testing, stem cell research, and education in biomedical ethics. These technologies are so new that surrounding theology and ethics are still being formulated. Viewed through the lens of politics and economics, the new genetics is also a justice issue.

"Science is prompting individuals, families, health professionals and legislators to raise questions about the uses,
patenting, and sale of genetically altered genes and DNA sequences," reads the committee report. "…The question of who should benefit from investment in research needs to be informed by considerations of justice, and by attention to those on the margins of society and who lack basic health care."

Bioethics is the study of social, ethical and spiritual questions that surround the expanding technological possibilities in medicine and life sciences. One resolution (AO13) calls for a program of sustained study in bioethics to inform and educate congregations and clergy about the choices they and their children will face in the future. This proposal requests a budget of $36,000 for the next triennium to develop biomedical ethics in the national Church.

This resolution also recommends ecumenical and interfaith discussion of biomedical ethics, and preparation to join with other groups in interfaith education ventures. For this to happen, Executive Council recommends that clergy, seminarians, and laity study a new book, A Christian Response to our Genetic Powers, which encapsulates the findings of this task force, and which will be distributed at General Convention.

Resolution A014 [See below] involves the medical frontier of stem cell research. Biomedical researchers have discovered that human stem cells might be helpful in treating diseases like Alzheimer's, Parkinson's, diabetes, stroke, spinal cord injuries, and cardiovascular disease. In their research, scientists are using both adult human stem cells and early embryonic human stem cells -- the latter has triggered ethical concerns.

"Episcopalians generally recognize that early embryos are owed special moral consideration," says the committee report. "For some this is because they are already persons in the eyes of God; for others the fact that embryos may mature and be born as children makes them special."

This resolution concerns embryos created during in vitro procedures at fertility clinics, where many are created to ensure a successful procedure. "Early embryos remaining after IVF procedures have ended could morally be donated for embryonic stem cell research," reads the report. This proposal also spells out the limitations: that early embryos not be created for research, or obtained through sale or purchase.

Ethical guidelines for gene therapy are contained in AO11 Somatic cell gene therapy injects cells into non-reproductive cells of humans, and might prevent or treat serious illness. Germline intervention uses genes in early embryos. This resolution calls for ongoing public oversight of both procedures, and states that germline interventions should not be used in human beings until they have been proven safe and stable.

Children and the new genetics are the focus of resolution A012, which states that reproductive cloning is not morally acceptable at this juncture because the technique is an unsafe experimentation on children. It further states that parents make wise use of treatment for genetic diseases and somatic gene transfer therapies if they are proven safe and effective. - Courtesy of EVERY VOICE NETWORK. Originally posted by Coleen O'Connor July 7.

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