“Stop Talking to People; Talk with Them”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark

TY - JOUR

T1 - “Stop Talking to People; Talk with Them”

T2 - A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark

AU - Sheikh, Zainab Afshan

AU - Hoeyer, Klaus

PY - 2019/2/1

Y1 - 2019/2/1

N2 - This article explores how research participants experienced information practices in an international genetic research collaboration involving the collection of biomaterial and clinical data in both Pakistan and Denmark. We investigated how people make sense of their research participation and the types of information they need and desire. We found great variation in what information exchange does and what participants experience as meaningful. For example, information practices could serve as a source of respect and recognition (in Denmark) or of hope, understanding or help when dealing with suffering (in Pakistan). Policies aimed at harmonizing ethics standards for international research do not encapsulate some of the most important aspects of information practices for the research participants involved. We suggest shifting the focus from standards of one-way information delivery to a more process-oriented form of research ethics, where the contextual exploration of local needs through a mutual engagement with participants gains more ground.

AB - This article explores how research participants experienced information practices in an international genetic research collaboration involving the collection of biomaterial and clinical data in both Pakistan and Denmark. We investigated how people make sense of their research participation and the types of information they need and desire. We found great variation in what information exchange does and what participants experience as meaningful. For example, information practices could serve as a source of respect and recognition (in Denmark) or of hope, understanding or help when dealing with suffering (in Pakistan). Policies aimed at harmonizing ethics standards for international research do not encapsulate some of the most important aspects of information practices for the research participants involved. We suggest shifting the focus from standards of one-way information delivery to a more process-oriented form of research ethics, where the contextual exploration of local needs through a mutual engagement with participants gains more ground.

U2 - 10.1177/1556264618780810

DO - 10.1177/1556264618780810

M3 - Journal article

C2 - 29998790

SN - 1556-2646

VL - 14

SP - 3

EP - 14

JO - Journal of Empirical Research on Human Research Ethics

JF - Journal of Empirical Research on Human Research Ethics

IS - 1

ER -