The National Society of Genetic Counselors and the International Society of Nurses in Genetics support the release of any genetic information upon request to third parties including relatives, but only with the patient's consent. One of the tenets of genetic counseling is to maintain information received from clients as confidential, unless released by the client or consent for disclosure is provided as required by law.[4,20]
Similar to the Privacy Rule, the U.S. Bioethics Commission, American Society of Human Genetics, and National Human Genome Research Institute (NHGRI) recommend the following guidelines to identify exceptional circumstances under which it is ethically acceptable to breach confidentiality.[4,8]
- There is a high likelihood of harm if the relative is not warned.[4,22,23]
- The patient, despite encouragement, refuses to inform family members.[4,22,23]
- The relative is identifiable.
- The harm of nondisclosure is greater than the harm of disclosure.
- Current medical technology renders the disease preventable, treatable or manageable.
- Only the information necessary to prevent harm is released.[4,24]
- There is no other reasonable way to avert harm.
At an international level the World Health Organization and World Medical Association have similar guidelines. Additionally, Australia, Canada, Germany, Japan, the Netherlands, and the United Kingdom have guidelines supporting the disclosure of genetic information to relatives under similar exceptional circumstances.
Employment and Insurance Discrimination
Genetic information obtained from genetic susceptibility tests may have medical, economic, and psychosocial implications for the individual tested and his or her family members. Employment and insurance discrimination are common concerns for individuals considering genetic testing. A review of ethical controversies in cancer genetics clinics included a phone interview of over 300 members of genetics support groups;13% of the study participants reported being denied or dismissed from a job and 22% reported being refused life insurance because of a genetic disorder in the family.[10,12,25]
Few empiric studies have documented the occurrence of insurance, employment, or other discrimination based on genetic test results for hereditary cancer syndromes. A study published in 2000 (8 years prior to the passage of the federal Genetic Information Nondiscrimination Act [GINA]) concluded that the use of information regarding presymptomatic genetic testing in health insurance underwriting decisions rarely, if ever, occurred either before or after the passage of state laws prohibiting such discrimination. Findings in this study were based on interviews with 29 genetic counselors, 5 patient advocates, 12 insurance regulators, 35 representatives of insurers, and 30 insurance agents.
In a smaller study of 47 unaffected BRCA or mismatch repair mutation carriers, a few instances of denial or limitation of life and health insurance benefits were reported following genetic testing; however, it was not possible to determine whether these adverse effects were directly related to the results of genetic testing. Nonetheless, a subset of mutation carriers reported that they paid for genetic testing out-of-pocket to avoid possible insurance discrimination (32%), had relatives who did not have genetic testing because of discrimination concerns (13%), and expressed reluctance to seek new job opportunities because of concerns about insurance coverage (13%).