The ethics of recruiting study participantson social media16 March 2017, by Heather Zeiger

Credit: CC0 Public Domain

(Medical Xpress)—In the recent issue of the American Journal of Bioethics, the target articleaddresses the ethics of finding participants forclinical trials on social media sites. The authors,from Harvard Law School and Harvard MedicalSchool, analyzed the particular ethical issues thatoccur in the online setting compared to in-personrecruitment and provide practicalrecommendations for investigators and InstitutionalReview Boards (IRBs).

"Recruitment to clinical trials is extremelychallenging, raising distinctively practical and ethical issues, and social media is beginning toshow real promise as a recruitment tool, duelargely to its ubiquity and use among just aboutevery demographic," Professor Luke Gelinas ofHarvard Law School told Phys.org. He says thatthere has been little serious reflection on the

ethical and regulatory issues raised by recruitmentusing social media. He also thinks that recruitingvia social media risks being under-utilized.

"Our working group wanted to address the ethicalissues toward the end of providing some concreteguidance to IRBs and investigators, which canhopefully facilitate the review and use of socialmedia as a recruitment mechanism."

Today online communities provide virtual supportgroups for people with certain diseases and fortheir friends and family making virtual groups agood place to find potential research participants.Furthermore, social media allows researchers tofind participants that have been traditionally hard-to-reach, such as those with rare diseases.

According to Gelinas, "One of the main takeawaysfrom our article is that recruiting online is in manyways similar to more traditional 'off-line' methods ofrecruitment. You can usually draw analogiesbetween online and off-line scenarios—e.g.,comparing approaching a social media supportgroup for cancer to approaching an in-personhospital support group—that can help us get ourbearings when evaluating social mediarecruitment."

In-person recruitment can be divided into twocategories: passive and active. Passive recruitmentmight be posting a flyer in a doctor's office in hopesthat a potential participant will contact them. Thiswould be analogous to posting a banner ad on amedical website or an online patient support group.

Active recruitment, on the other hand, wouldinvolve emailing a particular patient in an onlinesupport group based on the person's online activity.This would be analogous to approaching aparticular patient in a clinic based on the doctor'sknowledge of his or her condition. With these twodistinctions in mind, ethical guidelines can be laidout for online recruitment.

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Where possible, the rules for active and passiverecruitment offline, also apply to the online platform.Gelinas et al. suggest first identifying an analogousoffline situation to the social media technique beingproposed. In this way investigators and IRBs canidentify the most pertinent ethical considerations inthe offline situation and use them as a guide to theethics of the online situation. Then, they canidentify ways that the online version differs from theoffline version.

In-person or offline ethical norms prioritizebeneficence, respect for persons, and justice.These foundational norms can therefore betranslated to the online world. However, the onlineplatform is distinctive in that it provides moreinterconnectedness and embedded personalinformation than offline interactions do. Because ofthis, the authors contend that every onlineinteraction must address respecting the privacy andrespecting the other interests of social media users.Additionally, they discuss the importance ofinvestigator transparency in online interactions.

Respect for privacy can be a tricky thing when itcomes to social media and other online platforms.For one, people may share personal informationthat, if they knew it would be used for researchpurposes, they may not share. Additionally, manypeople are unaware of online security risks and endup sharing information that is more easilyaccessible than they thought. Investigators areencouraged to seek permission to use personalinformation even if the information has technicallybeen published online. Furthermore, investigatorsshould not share personal information even if it hasbeen shared online.

Transparency, which would fall under respect forpersons, requires investigators to be up-front withwho they are and the nature of their researchonline. Specifically when recruiting, investigatorsshould be honest in describing the aims, details,risks, and benefits of their study. In many cases,investigators may need to contact the sitemoderator to obtain permission to recruit from theirgroup. Additionally, investigators should not createfake online identities or pose as a participant of thegroup.

One issue that is specific to the online platform inregards to transparency is whether investigatorsare required to let people know that they arecollecting data. Depending on the nature of theresearch study, investigators could reasonablyobtain information just by "lurking" on the grouppage. The authors contend that the obligation foran investigator to disclose that he is collecting datais related to how public the particular social mediagroup is. If the group is a closed-group in whichonly members can view comments, then this wouldlikely mean the investigator should disclose that heis doing a study.

Another issues specific to online recruiting istapping into someone else's network to findpotential research participants. A participant'snetwork will likely have people who have similardemographics, experiences, or qualities to theresearch participant. However tapping into theresearch participant's network risks disclosing theparticipant's eligibility for a particular clinical trial.Therefore, this must be done in such a way thatprotects the privacy of the participant.

Finally, there is a risk that people will discuss aclinical trial online. Unlike in-person trials whereparticipants may not come in contact with eachother, they possibly could interact online, especiallyif they are from the same support group or network.This may skew the results of the trial.

Clinical trials are an important part of medicalresearch, but as many as 60% of clinical trials aredelayed or cancelled because researchers cannotfind enough research participants. Turning to onlineplatforms increases the number of people that aninvestigator can reach, which in turn, results inmore participants available for a study.

"While some IRBs have explicit policies in place forsocial media recruitment, many do not, and there isa sense, as in other areas, that the technology isoutpacing the ethics," Gelinas says. "For IRBs whohave the bandwidth, developing written policies andholding educational sessions on social media canbe extremely helpful in getting members up tospeed, and we hope that our work can be useful inthis effort."

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More information: Luke Gelinas et al. UsingSocial Media as a Research Recruitment Tool:Ethical Issues and Recommendations, TheAmerican Journal of Bioethics (2017). DOI:10.1080/15265161.2016.1276644

AbstractThe use of social media as a recruitment tool forresearch with humans is increasing, and likely tocontinue to grow. Despite this, to date there hasbeen no specific regulatory guidance and there hasbeen little in the bioethics literature to guideinvestigators and institutional review boards (IRBs)faced with navigating the ethical issues such useraises. We begin to fill this gap by first defending anonexceptionalist methodology for assessing socialmedia recruitment; second, examining respect forprivacy and investigator transparency as key normsgoverning social media recruitment; and, finally,analyzing three relatively novel aspects of socialmedia recruitment: (i) the ethical significance ofcompliance with website "terms of use"; (ii) theethics of recruiting from the online networks ofresearch participants; and (iii) the ethicalimplications of online communication from andbetween participants. Two checklists aimed atguiding investigators and IRBs through the ethicalissues are included as appendices.

© 2017 Medical XpressAPA citation: The ethics of recruiting study participants on social media (2017, March 16) retrieved 31January 2022 from https://medicalxpress.com/news/2017-03-ethics-social-media.html

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