Doing research as if participants mattered | Impact of Social Sciences

peter.suber's bookmarks 2022-09-05


"Let’s think about ‘informed consent’. This concept is over 100 years old and badly out of date. The internet is now a fact of life, a boon for research dissemination, but it has also enabled people to do all sorts of things with research data, findings, and outputs that cannot be predicted. Funders are also now, quite rightly, requiring researchers to deposit data in open access archives for re-analysis and re-use – but, again, we cannot predict the nature of that re-use. For these two reasons alone, informed consent [for sharing data about oneself] is now a myth. Yet, it is a myth to which countless research ethics committees and institutional review boards still cleave. Instead, we need to figure out how to empower potential participants to assess the risks they would face from taking part in our research, and support them in making the best decisions for their own unique circumstances...."


From feeds:

Consent and coercion » peter.suber's bookmarks
Open Access Tracking Project (OATP) » peter.suber's bookmarks

Tags: oa.medicine oa.patients oa.privacy oa.consent oa.reuse oa.lay

Date tagged:

09/05/2022, 09:27

Date published:

09/05/2022, 05:29