Informed Consent

The ethical constraints that apply to any medical test also apply to genetic testing, although ensuring informed consent complicated by not only the inherent complexity of genetics, but the fact that the patient is not only the individual, but his or her blood relatives as well. Ensuring the genetic literacy of all is a major unmet need. Whether individuals are told all that they need to know may be compromised by practitioner information and level of understanding (also an important as yet unmet need). Whether individuals truly understand the information provided may be questionable, as the consent process itself is not foolproof. Understanding genetic risk is particularly challenging because the tendency to simplify to ensure comprehension can backfire by reinforcing incorrect notions of biological determinism. Conveying information via interpreters is especially challenging from an ethical standpoint for several reasons. Interpreters are not required to be trained in genetics, ethics, or cultural norms associated with nonnative speakers and so may unintentionally use language that conveys nonneutral meanings. Often, children are used to interpret for parents raising a host of issues including patient privacy, the appropriateness of involving children in the intimate issues raised, and the effect of such exposure on a parent's future relationship with the child.

Furthermore, because genetic testing can require family history information, there is potential for harm to the patient (would-be testee), if family members are unwilling to participate. Balancing the privacy rights within families may be contentious. In 1998, a participant in a clinical genetics research study provided her father's family history information, as per the study protocol. But the father blocked researchers' access to his medical record, arguing that he did not consent to disclosure, and disclosure without his consent amounted to a right to privacy violation.1-12-1 The question of whether disclosure of family history information requires the consent of each, and all, family relatives remains uncertain, as does whether consent applies to deceased individuals, and if so, how. Moreover, in the case of identical twins where one wants to know and the other does not, determining whose right merits priority is difficult, particularly in light of the fact that it is highly improbable that both rights could be exercised and adequately guarded.

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