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Practical barriers and ethical challenges in genetic data sharing

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Practical barriers and ethical challenges in genetic data sharing. / Simpson, Claire L; Goldenberg, Aaron J; Culverhouse, Rob; Daley, Denise; Igo, Robert P; Jarvik, Gail P; Mandal, Diptasri M; Mascalzoni, Deborah; Montgomery, Courtney Gray; Pierce, Brandon; Plätke, Rosemarie; Shete, Sanjay; Goddard, Katrina A B; Stein, Catherine M.

In: INT J ENV RES PUB HE, Vol. 11, No. 8, 2014, p. 8383-98.

Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

Harvard

Simpson, CL, Goldenberg, AJ, Culverhouse, R, Daley, D, Igo, RP, Jarvik, GP, Mandal, DM, Mascalzoni, D, Montgomery, CG, Pierce, B, Plätke, R, Shete, S, Goddard, KAB & Stein, CM 2014, 'Practical barriers and ethical challenges in genetic data sharing', INT J ENV RES PUB HE, vol. 11, no. 8, pp. 8383-98. https://doi.org/10.3390/ijerph110808383

APA

Simpson, C. L., Goldenberg, A. J., Culverhouse, R., Daley, D., Igo, R. P., Jarvik, G. P., Mandal, D. M., Mascalzoni, D., Montgomery, C. G., Pierce, B., Plätke, R., Shete, S., Goddard, K. A. B., & Stein, C. M. (2014). Practical barriers and ethical challenges in genetic data sharing. INT J ENV RES PUB HE, 11(8), 8383-98. https://doi.org/10.3390/ijerph110808383

Vancouver

Simpson CL, Goldenberg AJ, Culverhouse R, Daley D, Igo RP, Jarvik GP et al. Practical barriers and ethical challenges in genetic data sharing. INT J ENV RES PUB HE. 2014;11(8):8383-98. https://doi.org/10.3390/ijerph110808383

Bibtex

@article{5ccfc727f68b45bfb1566e3d6c01aecf,
title = "Practical barriers and ethical challenges in genetic data sharing",
abstract = "The underlying ethos of dbGaP is that access to these data by secondary data analysts facilitates advancement of science. NIH has required that genome-wide association study data be deposited in the Database of Genotypes and Phenotypes (dbGaP) since 2003. In 2013, a proposed updated policy extended this requirement to next-generation sequencing data. However, recent literature and anecdotal reports suggest lingering logistical and ethical concerns about subject identifiability, informed consent, publication embargo enforcement, and difficulty in accessing dbGaP data. We surveyed the International Genetic Epidemiology Society (IGES) membership about their experiences. One hundred and seventy five (175) individuals completed the survey, a response rate of 27%. Of respondents who received data from dbGaP (43%), only 32% perceived the application process as easy but most (75%) received data within five months. Remaining challenges include difficulty in identifying an institutional signing official and an overlong application process. Only 24% of respondents had contributed data to dbGaP. Of these, 31% reported local IRB restrictions on data release; an additional 15% had to reconsent study participants before depositing data. The majority of respondents (56%) disagreed that the publication embargo period was sufficient. In response, we recommend longer embargo periods and use of varied data-sharing models rather than a one-size-fits-all approach.",
keywords = "Attitude, Databases as Topic, Genome-Wide Association Study, Humans, Information Dissemination, Informed Consent, Perception, Questionnaires",
author = "Simpson, {Claire L} and Goldenberg, {Aaron J} and Rob Culverhouse and Denise Daley and Igo, {Robert P} and Jarvik, {Gail P} and Mandal, {Diptasri M} and Deborah Mascalzoni and Montgomery, {Courtney Gray} and Brandon Pierce and Rosemarie Pl{\"a}tke and Sanjay Shete and Goddard, {Katrina A B} and Stein, {Catherine M}",
note = "Journal KURZtitel? ",
year = "2014",
doi = "10.3390/ijerph110808383",
language = "English",
volume = "11",
pages = "8383--98",
journal = "INT J ENV RES PUB HE",
issn = "1660-4601",
publisher = "Multidisciplinary Digital Publishing Institute (MDPI)",
number = "8",

}

RIS

TY - JOUR

T1 - Practical barriers and ethical challenges in genetic data sharing

AU - Simpson, Claire L

AU - Goldenberg, Aaron J

AU - Culverhouse, Rob

AU - Daley, Denise

AU - Igo, Robert P

AU - Jarvik, Gail P

AU - Mandal, Diptasri M

AU - Mascalzoni, Deborah

AU - Montgomery, Courtney Gray

AU - Pierce, Brandon

AU - Plätke, Rosemarie

AU - Shete, Sanjay

AU - Goddard, Katrina A B

AU - Stein, Catherine M

N1 - Journal KURZtitel?

PY - 2014

Y1 - 2014

N2 - The underlying ethos of dbGaP is that access to these data by secondary data analysts facilitates advancement of science. NIH has required that genome-wide association study data be deposited in the Database of Genotypes and Phenotypes (dbGaP) since 2003. In 2013, a proposed updated policy extended this requirement to next-generation sequencing data. However, recent literature and anecdotal reports suggest lingering logistical and ethical concerns about subject identifiability, informed consent, publication embargo enforcement, and difficulty in accessing dbGaP data. We surveyed the International Genetic Epidemiology Society (IGES) membership about their experiences. One hundred and seventy five (175) individuals completed the survey, a response rate of 27%. Of respondents who received data from dbGaP (43%), only 32% perceived the application process as easy but most (75%) received data within five months. Remaining challenges include difficulty in identifying an institutional signing official and an overlong application process. Only 24% of respondents had contributed data to dbGaP. Of these, 31% reported local IRB restrictions on data release; an additional 15% had to reconsent study participants before depositing data. The majority of respondents (56%) disagreed that the publication embargo period was sufficient. In response, we recommend longer embargo periods and use of varied data-sharing models rather than a one-size-fits-all approach.

AB - The underlying ethos of dbGaP is that access to these data by secondary data analysts facilitates advancement of science. NIH has required that genome-wide association study data be deposited in the Database of Genotypes and Phenotypes (dbGaP) since 2003. In 2013, a proposed updated policy extended this requirement to next-generation sequencing data. However, recent literature and anecdotal reports suggest lingering logistical and ethical concerns about subject identifiability, informed consent, publication embargo enforcement, and difficulty in accessing dbGaP data. We surveyed the International Genetic Epidemiology Society (IGES) membership about their experiences. One hundred and seventy five (175) individuals completed the survey, a response rate of 27%. Of respondents who received data from dbGaP (43%), only 32% perceived the application process as easy but most (75%) received data within five months. Remaining challenges include difficulty in identifying an institutional signing official and an overlong application process. Only 24% of respondents had contributed data to dbGaP. Of these, 31% reported local IRB restrictions on data release; an additional 15% had to reconsent study participants before depositing data. The majority of respondents (56%) disagreed that the publication embargo period was sufficient. In response, we recommend longer embargo periods and use of varied data-sharing models rather than a one-size-fits-all approach.

KW - Attitude

KW - Databases as Topic

KW - Genome-Wide Association Study

KW - Humans

KW - Information Dissemination

KW - Informed Consent

KW - Perception

KW - Questionnaires

U2 - 10.3390/ijerph110808383

DO - 10.3390/ijerph110808383

M3 - SCORING: Journal article

C2 - 25153467

VL - 11

SP - 8383

EP - 8398

JO - INT J ENV RES PUB HE

JF - INT J ENV RES PUB HE

SN - 1660-4601

IS - 8

ER -