Gary Allen and Nik Zeps
In recent years, research funding bodies (e.g. the ARC and the NHMRC), journals, scientific bodies and institutions, have called upon researchers to share their data and it is widely accepted that this is necessary and important. Whilst the value of Data sharing is not up for debate, and the technical ways of achieving this are all achievable, this post will not focus on these.
What it is discussing, is the ethical matters that must be addressed as part of data sharing plans and the suggested criteria for ensuring that sharing of data meets ethical requirements.
This is important because ethical concerns are often invoked as a reason why researchers cannot share their data.
It is a fundamental ethical and legal principle that people should be asked permission for use of their personal information. Questions have arisen as to whether a person can give broad and open consent to use their data beyond the initial purpose disclosed to them.
Using the National Statement, consider the following questions;
Q Is broad consent ‘informed’?
Q Can a person delegate authority to broad or defined secondary use of their information to an independent 3rd party such as a HREC?
Q Does secondary use of data have to have personal identifiers removed?
Q How does the feasibility and impact of going back to a person to ask for their consent influence how consent is managed? How does this impact the requirement for consent for secondary use?
Public interest in data sharing
Collecting information as part of a study may be time consuming and costly. It may also involve participation of people who are hard to reach or who may be difficult to follow up, especially if they have a condition that leads to their death such as advanced cancer. In these cases, it is not possible to go back to them to ask for new consent. It is also important that the data is shared as widely as possible as there may be important public health concerns that could be addressed through their information.
Q What is the best way to balance the public interest in sharing data versus the private interests of a person in their privacy?
Q What is the best way to manage this? Think about the balance between the considerations HRECs must make and the expectations of the community.
If the general public is interested in a field of research, it is likely that they expect researchers to work collegiately and cooperate, rather than selfishly compete. Researchers often have personal interest in using data as they are compelled to publish articles and write grants to ensure their continued employment by Universities and Research Institutes. The global COVID-19 pandemic is perhaps a good example of where data sharing should have occurred, despite the stakes of being the first to publish important findings.
Q Consider the ways in which the interests of researchers, research institutes and funders are balanced against the public expectation that they will benefit from the research.
Ethical stakes when sharing data
Here are a few considerations when sharing data:
- Could the data be personally identified by third parties, including internal identification by peers, colleagues or family?
- Are there any risks in it being known that an individual has participated?
- Are there any other risks to the participants or other participants?
- If you are concerned about scooping (another researcher publishing on the topic before you), you might want to share your data after publication – some journals are urging authors to share their data, at least upon request.
Here are a few considerations when sharing data:
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Publisher (Free access): http://jre.sagepub.com/content/10/3/317
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Publisher (Open Access): http://www.nejm.org/doi/full/10.1056/NEJMe1611027
Interview with Jeffrey Drazen: Listen | Download
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Stuart, D., Grace Baynes, S., Hrynaszkiewicz, I., Allin, K., Penny, D., Lucraft, M & Astell, M. (2018) Whitepaper: Practical challenges for researchers in data sharing. Springer nature
Publisher (Includes media release): https://www.springernature.com/gp/open-research/open-data/practical-challenges-white-paper
Williams G & Pigeot I (2016) Consent and confidentiality in the light of recent demands for data sharing. Biometrical Journal. doi: 10.1002/bimj.201500044
This post may be cited as:
Allen, G. and Zeps, N. (28 June) An ethics argument for data sharing. Research Ethics Monthly. Retrieved from: https://ahrecs.com/an-ethics-argument-for-data-sharing/