Key Points

• Clinicians should consider potential ELSIs when discussing genetic testing with patients.

• GINA provides national protections against health insurance and employment discrimination based on genetic information. HIPAA provides insurance portability and privacy protections. Some states have more comprehensive statutes to prevent genetic discrimination.

• Case law suggests that family members have a right to know whether genetic information affects their personal health, and that health care providers have a duty to warn family members of health risks.

• Minors incapable of providing informed consent should not be tested for conditions not immediately relevant to their health or not treatable in childhood.

Significant potential ethical, legal, and social issues (ELSIs) are associated with the use of genomic technologies in health care, and funding for research regarding ELSIs was part of the Human Genome Project from the outset. ELSIs include concerns regarding potential for discrimination or stigmatization based on one's genome, the right to know or not know one's genetic status in family settings, potential adverse effects of genetic testing on reproductive decision making, and discomfort with genetic testing of conditions for which treatment in childhood is not recommended or is not available.

Many patients are concerned that genetic information could be used as a tool for discrimination by health insurers and employers. In 2008 the Genetic Information Non-discrimination Act (GINA) became U.S. law and provides national protection against use of genetic and family history information as a basis for discrimination by health insurers or employers (Hudson, 2008). However, the law does not prevent use of genetic information by life, long term care, or disability insurers. Some states have laws providing for more stringent protections than those afforded by GINA, and physicians should be aware of the protections their states provide (National Conference of State Legislatures, 2008).

Family physicians must remember that a genetic diagnosis affecting a patient has implications for the entire family. Before genetic testing, they should discuss the need to inform family members of abnormal results that might affect them. When a patient does not want family members to know that they have a genetic disease, the Health Insurance Portability and Accountability Act (HIPAA) has clarified and strengthened the patient's right to privacy of medical information. When knowledge of the patient's condition would not change health outcomes for the relative, the physician has no duty to warn. If the information can affect other family members' health, this presents a quandary. Some courts have ruled that physicians are liable for failure to inform other family members. Physician assistance in informing family members can also help the patient (Offit et al., 2004).

Several national groups of genetics professionals have developed consensus guidelines against genetic testing in minors, unless there is a potential immediate benefit to the child's health. Experience in adult-onset conditions has revealed that many people choose not to know if they are at risk for a genetically determined condition. Knowing about the risk of developing an adult illness in childhood, when no treatment or intervention is available, may present unnecessary intrusion into normal child and family development. Consequently, rather than test minors, it is often advisable to wait until adulthood so that a fully informed decision can be made about testing.

Reproductive decision making can be complex. It is important to remember that the quadruple screen or high-resolution ultrasound during pregnancy is genetic testing. Before patients undergo preconception or prenatal screening or testing, family physicians need to discuss the patient's expectations about results and subsequent pregnancy planning. Counseling before fetal testing should include detailed information about risks, benefits to parents and infants, probability of abnormal result, and implications of possible results, including inconclusive results or those indicating alternate paternity. Reproductive counseling has followed a nondirec-tive model, in which the health professional avoids biasing the woman's or the couple's decision-making process.

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