Relative responsibilities: is there an obligation to discuss genomics research participation with family members?
Public health genomics 2010; 13(7-8): 504-13
One of the many ethical challenges presented by research in genomics is that, although informed consent to research has traditionally been a matter for the individual participant, genomics research carries potential implications for genetic relatives. There are specific issues that arise when research is focused around populations or around family groups; this paper deals with the place of relatives of participants in genomics research more generally. Recently, in response to this challenge, recommendations have attempted to tread a middle ground by retaining traditional models of informed consent whilst suggesting that potential research recruits should be encouraged to discuss participation with their families. It is argued here that this may produce an unfair account of the responsibilities of research participants, that it may ignore the very many difficulties of communication within families about genetics and health, and that it may create unrealistic hurdles to the ethical conduct of research. Research conducted in the context of clinical genetics and on health communication more widely is drawn upon to illustrate these points. A clear recommendation is made that providing materials that may assist research participants to communicate with family members may be beneficial and may raise ethical standards, but that it may be unwise to burden participants with the suggestion that they owe specific obligations to genetic relatives to discuss research participation with them.
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