Social media health research needs ethics

Participant-led research such as studies conducted via social networks, are increasingly common and have several advantages over more standard research but there are some concerns about their ethical oversight, according to experts writing in PLOS Medicine.

Effy Vayena from the University of Zurich in Switzerland and John Tasioulas from University College London argue that the distinctive nature of such participant-led research means that the standards of ethical oversight should be adapted to strike a balance between protecting the interests of research participants and achieving the promised benefits of this new type of research.

The authors say: "Participant led research is not only potentially an exercise of personal autonomy and empowerment on the part of those involved, it is also an avenue for pursuing research into topics that are overlooked or sidelined by the scientific establishment."

They continue: "Yet, given how group dynamics may develop, a concern that arises here is the inappropriate use of peer-pressure to promote participation in a research project."

Three categories proposed

The authors argue that the ethical oversight should depend on the type of participant led research and propose three categories, in which category one has increased risk to participants and category three has minimal risk.

They say: "We believe that this scheme merits further discussion as one way of striking an appropriate balance between protecting the interests of research participants and realizing the distinctive benefits of participant led research."

The authors continue: "In this way, we might prevent ethics review becoming a strait-jacket on participant led research inspired innovation, stifling individual liberty, and serving as a disincentive to non-experts who might otherwise make valuable contributions to medical knowledge."

Vayena and Tasioulas conclude: "Failure to adequately address this issue, and to generate consensus on best practice, poses a threat of harm to participants, risks undermining the credibility of participant led research, and may eventually provoke a backlash of over-regulation that deprives us of its potential benefits."

We live in a world where facts and fiction get blurred
In times of uncertainty you need journalism you can trust. For 14 free days, you can have access to a world of in-depth analyses, investigative journalism, top opinions and a range of features. Journalism strengthens democracy. Invest in the future today. Thereafter you will be billed R75 per month. You can cancel anytime and if you cancel within 14 days you won't be billed. 
Subscribe to News24
Voting Booth
Zama zama crackdown: What are your thoughts on West Village residents taking the law into their own hands?
Please select an option Oops! Something went wrong, please try again later.
Results
Authorities should bring in the army already
10% - 2471 votes
Illegal miners can't be scapegoated for all crime
53% - 12639 votes
What else did we expect without no proper policing
34% - 8154 votes
Vigilante groups are also part of the problem
3% - 810 votes
Vote
Rand - Dollar
16.86
-1.2%
Rand - Pound
20.13
-0.3%
Rand - Euro
17.02
-0.4%
Rand - Aus dollar
11.68
-1.1%
Rand - Yen
0.12
-0.6%
Gold
1,760.10
-0.1%
Silver
19.60
-1.0%
Palladium
2,157.24
+0.6%
Platinum
916.00
-1.4%
Brent Crude
93.65
+1.4%
Top 40
64,184
+0.0%
All Share
71,011
+0.1%
Resource 10
63,890
+1.0%
Industrial 25
86,864
-0.7%
Financial 15
16,201
+0.3%
All JSE data delayed by at least 15 minutes Iress logo
Editorial feedback and complaints

Contact the public editor with feedback for our journalists, complaints, queries or suggestions about articles on News24.

LEARN MORE