Genome-wide association studies in developing countries raise important new ethical issues

November 24, 2009,

Typically conducted in richer, developed countries but now increasingly done in the developing world, genome wide association (GWA) studies raise a host of ethical issues that must be addressed, argues a Policy Forum article published this week in PLoS Medicine.

Among the most pressing ethical issues is the release of data, says Michael Parker of the University of Oxford and his colleagues, who highlight the importance of developing policies and procedures for data release appropriate to GWA studies in developing countries. To highlight the practical ethical issues, they describe the development of a GWA data-release policy for the Malaria Genomic Epidemiology Network (MalariaGEN), a partnership of malaria researchers in over 20 countries supported by the Grand Challenges in Global Health initiative.

Several ethical concerns are apparent in data release of GWA studies, say the authors: privacy, whether anonymity can be guaranteed, security, the implications of collecting and storing vast amounts of data and about its uncertain future use, the implications of data release for populations, and for family members of participants, the need to strike a proper balance between research and protection, the development of appropriate governance mechanisms, the implications for trust, consent, and autonomy, commercialization, and the ethical importance of the sustainability of databases and of emerging scientific capacity in developing countries.

To address these concerns, MalariaGEN developed a "managed" approach to oversee open access, define acceptable uses of data, and guide the timing of data release.

"It is our view that an ethical data-release policy must, in addition to providing adequate protections for research participants and their communities, be combined with adequate protections for the research aspirations of developing country scientists and with capacity-building activities to ensure that those aspirations have the potential to be realized," say the authors.

More information: Parker M, Bull SJ, de Vries J, Agbenyega T, Doumbo OK, et al. (2009) Ethical Data Release in Genome-Wide Association Studies in . PLoSMed 6(11): e1000143. doi:10.1371/journal.pmed.1000143

Source: Public Library of Science (news : web)

Related Stories

Recommended for you

Best of Last Year—The top Medical Xpress articles of 2017

December 20, 2017
It was a good year for medical research as a team at the German center for Neurodegenerative Diseases, Magdeburg, found that dancing can reverse the signs of aging in the brain. Any exercise helps, the team found, but dancing ...

Pickled in 'cognac', Chopin's heart gives up its secrets

November 26, 2017
The heart of Frederic Chopin, among the world's most cherished musical virtuosos, may finally have given up the cause of his untimely death.

Sugar industry withheld evidence of sucrose's health effects nearly 50 years ago

November 21, 2017
A U.S. sugar industry trade group appears to have pulled the plug on a study that was producing animal evidence linking sucrose to disease nearly 50 years ago, researchers argue in a paper publishing on November 21 in the ...

Female researchers pay more attention to sex and gender in medicine

November 7, 2017
When women participate in a medical research paper, that research is more likely to take into account the differences between the way men and women react to diseases and treatments, according to a new study by Stanford researchers.

Drug therapy from lethal bacteria could reduce kidney transplant rejection

August 3, 2017
An experimental treatment derived from a potentially deadly microorganism may provide lifesaving help for kidney transplant patients, according to an international study led by investigators at Cedars-Sinai.

Exploring the potential of human echolocation

June 25, 2017
People who are visually impaired will often use a cane to feel out their surroundings. With training and practice, people can learn to use the pitch, loudness and timbre of echoes from the cane or other sounds to navigate ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.