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

Research output: Contribution to journalJournal articleResearchpeer-review

Standard

“Stop Talking to People; Talk with Them” : A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark. / Sheikh, Zainab Afshan; Hoeyer, Klaus.

In: Journal of Empirical Research on Human Research Ethics, Vol. 14, No. 1, 01.02.2019, p. 3-14.

Research output: Contribution to journalJournal articleResearchpeer-review

Harvard

Sheikh, ZA & Hoeyer, K 2019, '“Stop Talking to People; Talk with Them”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark', Journal of Empirical Research on Human Research Ethics, vol. 14, no. 1, pp. 3-14. https://doi.org/10.1177/1556264618780810

APA

Sheikh, Z. A., & Hoeyer, K. (2019). “Stop Talking to People; Talk with Them”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark. Journal of Empirical Research on Human Research Ethics, 14(1), 3-14. https://doi.org/10.1177/1556264618780810

Vancouver

Sheikh ZA, Hoeyer K. “Stop Talking to People; Talk with Them”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark. Journal of Empirical Research on Human Research Ethics. 2019 Feb 1;14(1):3-14. https://doi.org/10.1177/1556264618780810

Author

Sheikh, Zainab Afshan ; Hoeyer, Klaus. / “Stop Talking to People; Talk with Them” : A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark. In: Journal of Empirical Research on Human Research Ethics. 2019 ; Vol. 14, No. 1. pp. 3-14.

Bibtex

@article{3ecbd174d2b24f8280123c6419f2356b,
title = "“Stop Talking to People; Talk with Them”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark",
abstract = "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.",
author = "Sheikh, {Zainab Afshan} and Klaus Hoeyer",
year = "2019",
month = "2",
day = "1",
doi = "10.1177/1556264618780810",
language = "English",
volume = "14",
pages = "3--14",
journal = "Journal of Empirical Research on Human Research Ethics",
issn = "1556-2646",
publisher = "SAGE Publications",
number = "1",

}

RIS

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

VL - 14

SP - 3

EP - 14

JO - Journal of Empirical Research on Human Research Ethics

JF - Journal of Empirical Research on Human Research Ethics

SN - 1556-2646

IS - 1

ER -

ID: 199678125