Balancing interests

Researchers need to access valuable human tissue samples in a manner which takes account of the precious nature of the resource, the responsibility of clinicians and pathologists to prioritise the diagnostic process, the rights of the individual donors, and the rapid rate of scientific and clinical advances.^[17]

13.14 The recommendations in this Report are intended to foster human genetic research, while providing reassurance to the community that such research is subject to proper ethical scrutiny and legal control. The recommendations balance the interests of researchers—who need access to human genetic samples and information from many sources—and the needs of individuals and their relatives—whose autonomy must be respected and whose privacy must be protected. The ability to conduct human genetic research may be prejudiced if potential volunteers fear that participation in research will generate information that they may subsequently be required to disclose to insurers, employers or others.

13.15 The interests of the genetic relatives of participants also need to be considered. Research results may be significant to the health of genetic relatives, including those who have not participated in the research and who may not have been aware that the research was being done. These family members may have an interest in the genetic samples or information of the research participant because testing those samples or acquiring that information may create new options for life decisions, including those with potential to improve health.

13.16 However, some family members may prefer not to be given information that may provide knowledge of future health or health risks. In addition, other family members who are not genetic relatives, such as partners and spouses, may have an interest because of concerns about the health of actual or potential offspring. The information generated by such research may also be of relevance to people in the community who are unrelated to participants or their families but whose family histories or health conditions have a similar genetic basis. Not all of this information will be of benefit to families. Indeed, in certain situations the implications of the information may be highly negative, such as incidental evidence of non-paternity.