We share everything on Facebook: our family photos, intimate thoughts, cherished memories and relationship woes. Some of us even share our DNA.
An ambitious new research project, Genes for Good, is now using Facebook to collect genetic information (Gregoire 2015). Scientists behind the project hope that Facebook users will provide DNA samples and use a free Facebook app to fill out periodic surveys about their health, habits and moods (Gregoire 2015). The scientists will screen the volunteers’ DNA to try to discover new links between genetic variants, health, and disease (Gregoire 2015). This has raised a number of complex ethical issues surrounding the use, accessibility and security of people’s personal health and genetic information.
Consent, confidentiality and an awareness of any possible negative impacts on individuals and groups involved should always be at the core of social research (Weerakkody 2008, p.77). This constitutes part of a researcher’s broader ethical obligation to ‘do the right thing’ by the project, its participants and society at large (Weerakkody 2008, p.73).
A consideration of ethics needs to be a critical part of the research process, ensuring that the process from the inception of the problem to the interpretation and publication of the research findings is trust-worthy and valid (Qualitative Practice n.d., p.59). Fabricating, falsifying or misrepresenting research data can ruin a researcher’s reputation (AARE n.d.). Furthermore, every instance of a researcher’s dishonesty lessens the credibility of other research results (AARE n.d.). In this way, striving for objectivity, integrity and openness in research helps build public support.
Adhering to ethical norms in research is also important to promote a variety of other moral and social values, such as social responsibility and human rights (Resnik 2011). Respecting human dignity, privacy and autonomy as well as taking careful precautions with disadvantaged groups safeguards participants from any mental or physical harm that might befall them as a result of their participation (Weerakkody 2008, p.77). Ensuring that participation in the research is voluntary also leads to more accurate and honest data being collected, with participants less likely to feel pressured to produce a desired outcome (Weerakkody 2008, p.76).
The importance of conducting research in a high ethical standard is evident in the Genes for Good project.While participants will not be told if they’re at risk for a genetic disease, individuals will be able to download an encrypted file with all of their raw genetic data (Gregoire 2015). This opens the possibility of false alarms and misunderstandings (Gregoire 2015). With the success of the research project being dependent on participant’s sharing their involvement with Facebook friends, concerns also exist surrounding whether participants are fully informed and have given meaningful consent (Hughes 2015).
Potential participants may also be concerned about the privacy of their personal health and genetic information. With the researchers planning to submit their findings to public resources and freeze the DNA samples for future screenings (Hughes 2015), the security of participant’s personal information is questionable.
Despite these potential drawbacks of the project, the benefits of developing insight into the causes of common diseases and thus, informing treatment and prevention efforts, outweighs the ‘small’ risks (Hughes 2015). The research is, therefore, ethically acceptable only when its potential benefits justify any risks involved (National Health and Medical Research Council 2014, p.1). Given that the project does not, however, offer many direct benefits to the research participants, with the data returned lacking meaning to the majority of citizens, people may be unwilling to assume a higher risk.
Will the researchers reach their target of 20,000 participants?
The Genes for Good project raises a number of important ethical issues. If the results are to be valuable, the research must be ethically conducted, trustworthy and socially responsible. This requires the research team to consider accessibility to the data collected, protecting participant’s personal privacy upon publishing the data and ensuring data security on the sharing of research findings with third parties.
Australian Association for Research in Education (AARE) n.d., AARE Code of Ethics, AARE, Canberra.
Gregoire, C 2015, ‘Want to Get Your DNA Tested? There’s a Facebook App For That’, Huffington Post, 4 March, accessed 5 April 2015, <http://www.huffingtonpost.com/2015/04/03/facebook-dna-testing_n_6986384.html>.
Hughes, V 2015, ‘A New Facebook App Wants To Test Your DNA’, BuzzFeed News, 31 March, accessed 5 April 2015, <http://www.buzzfeed.com/virginiahughes/a-new-facebook-app-wants-to-test-your-dna#.ueb0pwgGV9>.
National Health and Medical Research Council, 2014, National Statement on Ethical Conduct in Human Research, National Health and Medical Research Council, Australia.
Qualitative Practice n.d., SAGE Publications, London.
Resnik, DB 2011, What is Ethics in Research & Why is it Important, National Institute of Environmental Health Sciences, <http://www.niehs.nih.gov/research/resources/bioethics/whatis/>.
Weerakkody, ND 2008, ‘Research ethics in media and communication’, in Research Methods for Media and Communications, Oxford University Press Australia and New Zealand, South Melbourne, Victoria, p.73-91