Researching Human Genetic Variation: An Examination of the Ethics of Genetic Research

Abstract

Genetic testing of whole communities is a way of picking up disease trends within that community. The diseases will not necessarily be genetically based. They will also be influenced by environmental factors. However, long-term studies hold out the hope that patterns of living combined with the genetic markers could lead to medical breakthroughs to improve the health of whole communities. The major question here is whether, once a whole community gives up the genetic material for study and analysis, they lose control over the information in that material and whether they may be harmed by the ways in which the outcomes of the research are interpreted or released. We all remember the ‘warrior gene’ news headline in New Zealand when it was suggested that a certain gene that was prevalent in Mäori predisposed people to act more violently and aggressively. This had potential to deter people from wanting to release their genetic material for study.

An ethical protocol is set out here so that communities are aware of how their genetic material will be used in research and are consulted about the release of the research findings before they are made public. Indigenous communities have unique concerns in relation to genetic research. The impact of genetic information on them as communities is potentially greater than the impact on other, less defined, groups. Greater assurance needs to be given that the research will be conducted in accordance with robust ethical guidelines and that it will meet their expectations. Any research relationship must respect indigenous cultural beliefs and be in keeping with their values.

Researchers should explain to the community what the research is about and the potential likely findings, and how they would be released, so that the particular community can make a choice as to whether or not to be involved. Genetic samples should be considered to be ‘on loan’ to the researchers for the specific purposes for which consent was obtained. Guidelines for ethics committees in New Zealand require researchers to take steps to minimise potential harm to participants. The best way to achieve this is to work in partnership with participants to ensure that they fully understand what is happening and the researcher fully understands the participants and their potential concerns.