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Assessing Genetic Risks: Implications for Health and Social Policy
Autonomy can be defined as self-determination, self-rule, or self-governance. Autonomous agents or actions presuppose some capacity of reasoning, deciding, and willing. Moral, social, and legal norms establish obligations to respect autonomous agents and their choices. Respect for personal autonomy implies that agents have the right or power to be self-governing and self-directing, without outside control. In the context of genetic testing and screening, respect for autonomy refers to the right of persons to make an informed, independent judgment about whether they wish to be tested and then whether they wish to know the details of the outcome of the testing. Autonomy is also the right of the individual to control his or her destiny, with or without reliance on genetic information, and to avoid interference by others with important life decisions, whether these are based on genetic information or other factors. Respect for autonomy also implies the right of persons to control the future use of genetic material submitted for analysis for a specific purpose (including when the genetic material itself and the information derived from that material may be stored for future analysis, such as in a DNA bank or registry file).
Even though respect for autonomy is centrally important in our society, it is not absolute. It can be overridden in some circumstances, for example, to prevent serious harm to others, as is the case in mandatory newborn screening for phenylketonuria (PKU) and hypothyroidism.
The legal concept of autonomy serves as the basis for numerous decisions protecting a person's bodily integrity. In particular, cases have held that competent adults have the right to choose whether or not to undergo medical interventions.2 Before people make such a choice, they have a right to be informed of facts that might be material to their decision,3 such as the nature of their condition and its prognosis,4 the potential risks and benefits of a proposed test or treatment,5 and the alternatives to the proposed intervention.6 In the genetics context, health care providers have been held liable for not providing the information that a genetic test is available. 7
People also have a right to be informed about and to control the subsequent use of tissue that has been removed from their bodies. 8 There is some leeway under the federal regulations governing research involving human subjects for researchers to undertake subsequent research on blood samples provided for genetic tests (as in the newborn screening context) as long as the samples are anon-