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Ethical Issues in Genetics and Molecular Medicine – Introduction
Most health conditions, with the exception of infectious diseases, affect only the individuals who have them. Matters of diagnosis, treatment, and prognosis remain private between physician and patient (and, some would add, third-party insurers). Genetic issues affect families, current and prospective. Doctors, especially family practitioners who care for multiple members of the same family, may find themselves in conflict in regard to genetic information about one family member that affects the health or health prospects of other family members.
Access to Care
Diagnostic and therapeutic applications of genetic technology are both complex and expensive. Many procedures are available only in research facilities or are not covered by conventional health insurance plans. People who participate in clinical studies may have access to technologies that people who choose not to participate in research cannot have. As well, questions arise in regard to the relative value of certain applications of genetic technology. What purpose does genetic testing serve when there is no treatment or cure for the genetic condition?
This is a particular issue for adults who may carry gene mutations for genetic disorders such as Huntington’s disease, for whom the disease is inevitable if they have the mutation but for which at present there is no means to mitigate symptoms or the disease’s unpleasant progression, although promising therapies may be available soon. Some health experts argue that resources provide greater benefit for the larger good when they go toward conditions for which prevention, treatment, or cure is possible.
Informed and Autonomous Decision Making
For as much as researchers have learned and now know about human genetics there remain vast unknowns about the potential benefits, risks, and complications of genetically based treatments. In 2003 the US Food and Drug Administration (FDA), which oversees clinical research and approves new treatments, suspended certain gene therapy methods after people receiving apparently successful results suddenly acquired lethal leukemias. Informed consent, long the mainstay of treatment decision making, is increasingly difficult to apply. Other ethical issues arise in regard to making decisions about genetic conditions that affect the lives and circumstances of children or other family members. Further concerns involve legal and forensic applications of genetic information.
As technology provides ever-expanding knowledge, concerns also grow that what people learn about their health status could end up being used against them in settings ranging from health and life insurance coverage to job offers and even medical care opportunities. Though such concerns are not new, the inevitabilities of certain genetic outcomes put discrimination concerns in new perspective.
For further discussion of medical ethics within the context of the structures and functions of genetics, please see the overview section “Genetics and Molecular Medicine.”
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