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Biomedical Research: Genetic Testing and Confidentiality
| Article
# : |
18454 |
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Section : |
MODERN THOUGHT
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| Issue
Date : |
9 / 1990 |
4,659 Words |
| Author
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Dorothy C. Wertz
Dorothy C. Wertz is a research professor of Health Services
at
the Boston University School of Public Health. Her
publications include Ethics and Human Genetics: A Cross-
Cultural Perspective (Springer-Verlag) and Lying-In: A
History
of Childbirth in America (Yale University Press). A medical
sociologist, Professor Wertz has been in practice since 1965. |
It is the year 2030, and you apply for a credit card. As part of your application, the bank requires a tiny blood spot on a piece of paper. Your application is turned down because genetic analysis of your blood reveals that you have inherited susceptibilities to alcoholism and Alzheimer's disease. You protest that you do not drink and are only in your forties, saying that nobody in your family has ever had Alzheimer's. Sorry, says the bank, we don't want to take chances on people who might use money irresponsibly. To make matters worse, you are also turned down for health insurance. Although you are in excellent health and work to maintain a high level of fitness, the insurers do not like your genetic profile, which they obtained from a sample of your saliva. Sorry, they say, if we are going to stay in business we can't afford to insure people who may develop chronic diseases.
Sound farfetched? Not so, according to prominent geneticists. Within the next twenty years, scientists will map and sequence the human genome. This means that they first will locate each gene on the twenty-three pairs of human chromosomes and then will discover the sequence of proteins making up each gene. In the process, the will discover the sequence of proteins making up each gene. In the process, they will find genes that predispose people to many common illnesses, such as diabetes, heart disease, some types of cancer, and some mental disorders.
Although this new knowledge may help some people prevent the onset of disease by changing their lifestyles, it will not lead to new treatments in the foreseeable future. Instead, new knowledge about the human genome will pose a host of ethical problems in the areas of confidentiality and disclosure. For example, do individuals have a moral “duty to know” as much as possible about their genetic makeup, including a duty to take genetic tests, or should they have a “right not to know” about their genes? Should employers have the right to require genetic testing for susceptibility to occupationally related diseases, such emphysema or brown lung, before hiring? Should insurance companies be allowed to treat genetic information like other types of health information that are required on applications, or should genetic information be uniquely private? Should genetic “fingerprinting” be a standard means of personal identification? Do family members who share a common genetic heritage have rights to know information about each other's genetic makeup, at least insofar as this information may affect their own health? These are thorny ethical questions deserving of careful policy consideration.
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