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Social, Legal, and Ethical Implications of Genetic Testing

November 2nd, 2018 6:49 pm

disorder was untreatable as when the disorder was treatable (53 percent would contact a relative about the risk of Huntington disease; 54 percent about the risk of hemophilia A). Since most people at risk for Huntington disease have not chosen testing to see if they have the genetic marker for the disorder,67 geneticists may be overestimating the relative's desire for genetic information and infringing upon the relative's right not to know. They may be causing psychological harm if they provide surprising or unwanted information for which there is no beneficial action the relative can take.

In the legal realm, there is an exception to confidentiality: A physician may in certain instances breach confidentiality in order to protect third parties from harm, for example, when the patient might transmit a contagious disease68 or commit violence against an identifiable individual.69 In a landmark California case, for example, a psychiatrist was found to have a duty to warn the potential victim that his patient planned to kill her.70

The principle of protecting third parties from serious harm might also be used to allow disclosure to an employer when an employee's medical condition could create a risk to the public. In one case, the results of an employee's blood test for alcohol were given to his employer.71 The court held the disclosure was not actionable because the state did not have a statute protecting confidentiality, but the court also noted that public policy would favor disclosure in this instance since the plaintiff was an engineer who controlled a railroad passenger train.

An argument could be made that health care professionals working in the medical genetics field have disclosure obligations similar to those of the physician whose patient suffers from an infectious disease or a psychotherapist with a potentially violent patient. Because of the heritable nature of genetic diseases, a health professional whothrough research, counseling, examination, testing, or treatmentgains knowledge about an individual's genetic status often has information that would be of value not only to the patient, but to his or her spouse or relatives, as well as to insurers, employers, and others. A counterargument could be made, however, that since the health professional is not in a professional relationship with the relative and the patient will not be harming the relative (unlike in the case of violence or infectious diseases), there should be no duty to warn.

The claims of the third parties to information, in breach of the fundamental principle of confidentiality, need to be analyzed, as indicated earlier, by assessing how serious the potential harm is, whether disclosure is the best way to avert the harm, and what the risk of disclosure might be.

Disclosing Genetic Information to Spouses

The genetic testing of a spouse can give rise to information that is of interest to the other spouse. In the vast majority of situations, the tested individual will share that information with the other spouse. In rare instances, the information will not be disclosed and the health care provider will be faced with the issue of

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Social, Legal, and Ethical Implications of Genetic Testing

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