The purpose of this post is to encourage sharing of knowledge and ideas on the topic of modifying informed consent when working with human subjects to accommodate open licensing. Questions can be found at the end of the post.
Researchers who work with human subjects, as is common in disciplines such as health sciences, education, and social sciences, are expected to obtain informed consent from subjects prior to starting research for ethical and legal reasons.
To obtain informed consent, researchers must explain what will happen with the subject’s information and material (if applicable) and the potential consequences for the subject (beneficial and potential harm).
Consent in the context of traditional publishing meant consent to publish in one specific venue, typically under All Rights Reserved copyright. Policies and procedures for informed consent developed in this context will need to be modified in order for authors to publish using open licenses that actively invite re-use (and sometimes modification) through human and machine-readable licenses, in some cases for commercial use.
To illustrate the difference: an educational researcher might wish to obtain and use a photo of schoolchildren in a publication. In the traditional context, this permission involved publication in one venue (one journal or one book), with re-publication requiring permission from the copyright owner (publisher and/or author). Until recently, such material, while not forbidden to the general public, would usually only be found in an academic library. This is still the case with journals and books that are not yet open access. Open access per se expands access to anyone with an internet connection, but free access on the Internet is automatically covered by copyright in all countries that are signatories to the Berne Convention. Open licensing goes beyond expanding access to inviting re-use. In the case of Creative Commons licensing, the invitation is extended via a human readable form that is designed to facilitate easy understanding of permitted uses, a machine readable form that can be used by searchers to facilitate limiting searches to content by desired use, and a legal license that most people are not likely to read.
For example, publication under a CC-BY license would include traditional uses, and other beneficial uses such as re-use by another researcher building on the work of the original. CC-BY would also invite uses that could be harmful to the subjects, such as targeted commercial social media advertising or use of a modified photo in a video game (schoolkid becomes loser kid, perhaps target practice).
This does not mean that such uses would necessarily be legal, rather that open licensing is an invitation that makes such uses more likely to occur. The harmful uses described above are likely a violation of moral rights under copyright, privacy and/or publicity rights. There are potential legal remedies, but these can only be pursued after the harm is done and discovered by a subject with the means and incentive to pursue legal remedies.
The Chang v. Virgin Mobile case is an illustration of what can happen with sensitive material and lack of understanding of the implications of licensing. In brief, a photographer took a photo of a minor girl (family friend) and posted it to Flickr under a CC-BY license. Virgin Mobile interpreted the license as an invitation to use the girl’s photo in an ad campaign. The girl’s family sued Creative Commons (dropped this one) and Virgin Mobile. The case was eventually dropped for jurisdictional reasons (girl in Texas, company in Australia). Lawrence Lessig wrote about the case, arguing that Virgin’s interpretation of copyright was correct, but that the girl still has privacy rights as minor. A bit more on this here:
The Committee on Publication Ethics has published guidance for journals with respect to one type of particularly sensitive material, medical case reports. Excerpt of their General Principles on this topic:
- Publication consent forms should be required for any case report in which an individual or a group of individuals can be identified. This requirement also applies when a report involves deceased persons. Examples of identifying information are descriptions of individual case histories, photos, x-rays, or genetic pedigrees. A list of 23 potential identifiers has been published in BioMed Central’s Trials.
- Journals should not themselves collect the signed consent forms, because the receipt and storage of confidential patient information could subject them to cumbersome security requirements and potential legal liability under applicable privacy or patient information laws, such as the Health Insurance Portability and Accountability Act of 1996 in the USA.
These principles are designed to protect journals and their publishers, and only speak to one particular type of sensitive material. For me, this raises some questions. If anyone on the list has answers or ideas, I would love to hear them, on or off-list or as blog comments. If you reply off-list or on the blog and would prefer to be anonymous, please let me know. If warranted, I will summarize responses.
- COPE’s guidance is for the education and protection of journals. Is anyone aware of efforts for the education and protection of authors and their institutions on the topic of informed consent for open licensing?
- Do other publishers or organizations serving publishers have policies, guidance, sample forms, etc. to deal with informed consent and open licensing?
- Have any research ethics boards (or similar bodies) revised their guidance to accommodate informed consent and publication under open licenses?
- Is anyone aware of cases or analysis of potential implications of licensing for re-use for other types of material involving human subjects besides case reports?
- Do you have any other ideas or insights on this or closely related topics that I haven’t asked about?