| Title |
Consent and the ethical duty to participate in health data research
|
|---|---|
| Published in |
Journal of Medical Ethics, January 2018
|
| DOI | 10.1136/medethics-2017-104550 |
| Pubmed ID | |
| Authors | |
| Abstract |
The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. As such, for some studies the Institutional Review Board/Research Ethics Committee review process should not assess the practicality of gaining consent for data use. Instead the review process should focus on assessing the public good of the research, public engagement and transparency. |
Login to access the Attention Digest and the Sentiment Analysis related to this output.
X Demographics
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United Kingdom | 7 | 17% |
| United States | 4 | 10% |
| Canada | 3 | 7% |
| Spain | 3 | 7% |
| Saudi Arabia | 2 | 5% |
| Singapore | 2 | 5% |
| Norway | 2 | 5% |
| Japan | 1 | 2% |
| France | 1 | 2% |
| Other | 2 | 5% |
| Unknown | 14 | 34% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 26 | 63% |
| Scientists | 8 | 20% |
| Practitioners (doctors, other healthcare professionals) | 6 | 15% |
| Science communicators (journalists, bloggers, editors) | 1 | 2% |
Mendeley demographics
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 130 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Ph. D. Student | 16 | 12% |
| Researcher | 14 | 11% |
| Student > Bachelor | 13 | 10% |
| Other | 10 | 8% |
| Student > Master | 10 | 8% |
| Other | 24 | 18% |
| Unknown | 43 | 33% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 18 | 14% |
| Philosophy | 14 | 11% |
| Nursing and Health Professions | 12 | 9% |
| Social Sciences | 10 | 8% |
| Computer Science | 6 | 5% |
| Other | 20 | 15% |
| Unknown | 50 | 38% |