Confidentiality aims to promote the free flow of information between the patient and the physician so that the patient`s illness can be treated appropriately. Confidentiality protection is also justified on public health grounds, as sick people may not seek medical care at all if confidentiality is not respected. From a legal point of view, confidentiality in the doctor-patient relationship is generally preserved. However, genetic testing cannot always take place as part of a doctor-patient relationship: a non-doctor. Scientists can perform the tests, or screening can take place in the work environment. Moreover, it is not only the result of the test that raises privacy concerns. The sample itself can be stored (as in DNA banks or family attachment studies) for future use. Different types of information are relevant to people trying to exercise their autonomy by deciding whether or not to undergo genetic testing. This includes information about the severity, potential variability, and treatability of the condition being tested. For example, if a carrier status test is offered for a pregnant woman or a prenatal test for her fetus, she should be told whether the condition in question can be prevented or treated, or whether she should decide whether or not to abort (see Chapters 2, 4 and 5).

The Informed Consent Guidelines for Genetic Testing Research proposed by the Alliance of Genetic Support Groups are an excellent starting point for developing informed consent strategies in the field of genetics (see Chapter 4). Medicine is generally practiced in this culture of individual rights (with provisions on patients` right to refuse treatment and the right to control the dissemination of medical information about them), but there have been circumstances where the medical model has been replaced by the public health model that promotes disease prevention – for example, requiring certain medical interventions (such as vaccinations) and warning individuals of their health. risks (for example, through anti-smoking awareness campaigns or STD-related contact tracing). Some commentators have suggested applying the public health model to genetics,36 with mandatory genetic screening and even mandatory abortions for severely ill fetuses. A related measure could be to warn people about their risk of genetic disorders. Autonomy can be defined as self-determination, self-management or self-management. Autonomous actors or actions require a certain ability to think, decide and want to do so. Moral, social and legal norms commit to respecting autonomous actors and their decisions.

Respect for personal autonomy implies that agents have the right or power to govern and control themselves, without external control. In the context of genetic testing and screening, respect for autonomy refers to the right of individuals to make an informed and independent judgment as to whether they wish to be tested and whether they then wish to know the details of the test results. Autonomy is also the right of the individual to control his or her destiny, with or without dependence on genetic information, and to avoid interference by others in important life decisions, whether based on genetic information or other factors. Respect for autonomy also includes the right of individuals to control the future use of genetic material submitted for analysis for a specific purpose (although the genetic material itself and the information obtained from that material may be stored for future analysis, for example in a DNA database or a registration file). The fear that advances in genetics may lead to social risks is based on historical experience with other health problems. The scientific treatment of the subject focuses largely on ethical and legal principles, inspired by historical analogies and contemporary anecdotes 20-22. There is little empirical research on the prevalence of threats or the perception of social risks 23-28. These studies are almost uniformly based on self-reports of the experience of small, practical samples. Some focus on attitudes or behaviors in hypothetical circumstances. Many studies on social risk issues do so only marginally when examining a broader range of factors influencing health care utilization.29,30 However, it is difficult to apply the public health model to genetics. Some infectious diseases pose a potential immediate risk to society as a whole, as they can be transmitted to large numbers of people in a short period of time.

Potential victims are existing people who may be complete strangers to the affected person. Unlike infectious diseases, the transmission of genetic diseases does not pose an immediate threat to society. Although infectious diseases can quickly devastate a community, the transmission of genetic disorders to offspring does not necessarily have an immediate adverse effect, but creates a potential risk for a future generation in society.37 United States Supreme Court decisions on fundamental rights have ruled that future harm is not as paramount to the state as direct harm.38 The Americans with Disabilities Act (ADA) prohibits discrimination based on disability in employment, public services, housing and communications. In 1995, the EEOC issued an interpretation that discrimination based on genetic information related to a disease, disease, or other disorder is prohibited by the ADA. At a subsequent Senate hearing in 2000, EEOC Commissioner Paul Miller confirmed that the ADA “may be interpreted as prohibiting discrimination based on genetic information.” However, these EEOC opinions are not legally binding, and the question of whether the ADA protects against genetic discrimination in the workplace has never been tested in court. Although genetic data can be considered different in its impact on family members and its rare ability to predict future diseases, genetic data is more likely to be the same as that of other health information. “Genetic information” could be narrowly defined as the product of DNA-related tests, but many genetic diseases are diagnosed through direct clinical observation and family history. Broader definitions may extend genetic information to all genetic diseases, but it is known that many diseases have a genetic component, and more, if not most, diseases, are likely to have genetic links in the future.