Methods in Medical Ethics

By Jeremy Sugarman; Daniel P. Sulmasy | Go to book overview

15
Research in Medical Ethics:
Genetic Diagnosis1

Gail E. Henderson

Genetic screening is defined in the Encyclopedia of Bioethics as “programs designed to canvass populations of healthy individuals to identify those with genotypes that place them or their offspring at high risk for disease or defect.” Genetic testing is offered to individuals or families who are identified as being at increased risk for developing disorders or passing these defects on to their children (McEwen and Reilly 1995, 1000).2 The moral features of genetic screening and testing have been noted in the medical ethics literature (summarized in Murray and Botkin 1995, 1005-07), the popular press (Nelkin and Lindee 1995), and a wide number of social science and clinical disciplines (e.g., Conrad and Gabe 1999).

What are the main moral and ethical aspects of genetic diagnosis? First, in many cases, genetic information itself is seen as intellectually, morally, and socially problematic. Data on genetic risk is difficult to understand and interpret, even for physicians. It can also be inherently ambiguous, leading to further difficulty in understanding what a particular diagnosis means. Second, in contrast to some other diagnoses, a genetic diagnosis may herald a future event that may or may not be preventable. Third, a genetic diagnosis is at once both personal and social. It involves information about an individual's genetic identity that is also of direct concern to other, related people, including family members, and also racial and ethnic group members. Finally, a disproportionate share of the burden of prenatal genetic diagnosis and carrier screening falls on women. While most of these features are not unique to genetic testing and screening, in combination they pose a set of impressive ethical challenges to informed consent, confidentiality/privacy, and justice.

These challenges have set the stage for empirical research that has moral and ethical implications.3 Such research might address any of the following questions: Are people provided adequate information to make decisions regarding genetic screening and testing? If not, how can this be improved? How is the information provided by genetic diagnosis understood? What is the impact of genetic information on a person's life? Does access to information and services vary by ethnic group membership or social class? Are individual interests in conflict with those of family, ethnic group, or medical care providers, and if so, how can those interests best be reconciled? Is confidentiality of genetic information protected?

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