Although ethical issues related to genetic testing have been recognized for some time, they have become more urgent due to rapid advances in this field following the success of the Human Genome Project. This project – a multi-billion-dollar, 13-year program – was launched in 1990 to identify all of the estimated 20,000 to 25,000 genes and make them available for further study. The project used American scientists looking for a quick completion of a high-priority mission, but left a number of ethical challenges. In crafting licensing legislation for the government-funded Human Genome Project, Congress recognized that ethical conundrums would arise from the project`s technical successes and included the need to develop state-funded programs to address ethical, legal, and social issues. As a result, the U.S. Department of Energy and the National Institutes of Health have allocated a portion of their budgets to studying the ethical, legal, and social issues surrounding the availability of genetic information. During counselling, the counsellor may encounter other findings that may place him or her in an ethical dilemma.7 Some of them include fetal sex, results of questionable or potentially dangerous importance, false paternity, etc. Is it necessary to tell parents the sex of the fetus if this finding is not related to a disease, except in the case of X-linked disorders? Should physicians cooperate with the parents` desire or the person`s autonomy to know the fetal sex, especially if there is reason to believe that some parents will abuse the information and seek an abortion elsewhere because of unwanted sex? There are other circumstances in which the interests of a pregnant woman and her family members may diverge. For example, if the man`s father has Huntington`s chorea (an autosomal dominant trait), the pregnant woman might want to test the fetus for the gene. If the father did not want to know his own status, a conflict would arise between his right to know his fetus and his right to know nothing about himself.

Another example of conflict would be when problems arise during diagnostic coupling studies for prenatal or preclinical diagnosis in a family and some family members do not want to participate in testing (e.g., thalassemia testing). It may then be impossible to make a diagnosis in the index case. However, ethical and legal precedents hold that individuals cannot be forced to undergo such tests. Predicting susceptibility to hereditary breast, ovarian and colorectal cancer raises significant legal and ethical concerns. Healthcare professionals are required to disclose sufficient information to enable patients to make informed decisions. You also need to keep patient data private. These duties can conflict if a positive outcome in a patient implies that family members are also at risk. Legally, a distinction is made between a breach of confidentiality and the lawful disclosure of information in the interest of a patient or to avoid harming third parties.

Physicians also have a fiduciary duty to warn. Other issues concern the legal liability of genetic counsellors, whose disclosure may, for example, influence decisions about the birth of children, and the risk of socio-economic discrimination faced by people with known genetic susceptibility. Traditional ethical guidelines and principles can be applied to these and other issues, but feminist ethics are likely to be of particular importance in developing an ethical stance towards screening and counselling for hereditary breast and ovarian cancer. Nowadays, it is assumed that a child should know its genetic origin, as this would help assess the risk and calculate the possibility for the child to suffer from the disease and, in turn, prevent it if possible. But there are also families who want to keep the genetic origin secret. Genetic information is not just normal information, but information that can change the relationship of the people who participate in it. Thus, some families try not to share their genetic information with others or even with their family members. Both laws such as the Civil Code and the Public Health Code regulate many bioethical issues in France. The recent major legislative reform, the Bioethics Act, does not specifically mention counselling, but Article 4 amends the relevant Article 16-10 of the Civil Code concerning screening tests for genetic disease, so that the patient must be informed of the nature and finality of the test. Provisions on the competence of genetic counsellors and their working conditions have been established.

The European Convention on Human Rights and Biomedicine was signed in 1997. Austrian Genetic Engineering Act – According to Article 69, the implementation of non-directive genetic counselling before and after genetic testing is mandatory. Counselling covers medical facts, test results, and social and psychological consequences. The rule applies to both predictive genetic testing and carrier-based genetic testing (postnatal and prenatal). Austria has not signed the Convention on Human Rights and Biomedicine. The relationship between counsellor and client is based on values of care and respect for the client`s autonomy, individuality, well-being and freedom in clinical and research interactions. Therefore, genetic counselors work on this point: if a patient is examined in a biological relative on the basis of a cancer diagnosis and a genetic susceptibility to cancer is detected, they should be offered advice and follow-up, possibly with referral, to ensure that care meets current standards. In fact, genetic testing for any clinical purpose should be linked to the availability of interventions, including prenatal diagnosis, counselling, reproductive decision-making, lifestyle changes, and improved phenotypic screening. A particularly tricky issue related to the possession of genetic information could be the outcomes that affect paternity.

Prenatal and family tests may reveal that the husband, partner or other alleged father is not the biological father. In 1994, the Institute of Medicine`s Genetic Risk Assessment Committee recommended that the health care provider inform a woman in such situations, but not disclose this information to her partner.28 The reason the Institute of Medicine withheld such information was that “genetic testing should not be used in a way that disturbs families.” Another reason may be that the doctor-patient relationship exists exclusively with the woman. Others disagreed with the Institute of Medicine`s recommendation.29 In some cases, it is not just a matter of acting to protect families. For example, suppose a child is born with a disease caused by an autosomal recessive gene and the husband does not carry the harmful gene because he is not really the father. If the doctor maintained the charade of paternity, then counseling both parents (i.e. there are four chances that each subsequent child will have the same disease) would be wrong and could lead the husband to argue against more children or for unnecessary amniocentesis in all future pregnancies, or lead unduly to care for other members of his family. There are at least two issues related to the intersection of genetics and assisted reproductive technology (ART). First and foremost, it is necessary to examine whether all individuals, regardless of genotype, should have access to ART with their own gametes. In the past, people infected with harmful viruses that have the potential to be passed on to their children (e.g., human immunodeficiency virus) have been denied access to ART, in part because prior to the advent of various interventions, up to one-quarter of their offspring developed a fatal infection, a risk similar to that if both parents were carriers of a severe autosomal recessive disease. However, others have argued that “freedom of reproduction should take precedence in case of conflict over its exercise because.

[it] is at the heart of personal identity, dignity and meaning of life.”33 Such principles would allow expectant parents to be the arbiters of the magnitude of the risk to which a child might be exposed. In a large number of cases, when patients receive the results of genetic tests, they are part of information that also directly affects their biological parents. This familial quality of genetic information poses ethical dilemmas for physicians, particularly with respect to their duty of confidentiality. In these circumstances, some have postulated an ethical tension between, on the one hand, the clinician`s obligations to protect the confidentiality of the person who consented to a test and, on the other hand, the physician`s duty to protect the health of another person. For example, a woman who, while examining an affected son, discovers that she is a carrier of X-linked recessive disorder may choose not to inform her pregnant sister of her carrier status because she does not believe in abortion and fears that her sister will consider having an abortion.16 In another example, A woman identified as carrying a gene that predisposes individuals to cancer may not want to share the information with relatives, some of whom might even be patients of the same doctor who tested her, as such disclosure would reveal her own carrier status.