Parents’ attitudes toward consent and data sharing in biobanks: A multisite experimental survey

Armand H.Matheny Antommaria, Kyle B. Brothers, John A. Myers, Yana B. Feygin, Sharon A. Aufox, Murray H. Brilliant, Pat Conway, Stephanie M. Fullerton, Nanibaa’ A. Garrison, Carol R. Horowitz, Gail P. Jarvik, Rongling Li, Evette J. Ludman, Catherine A. McCarty, Jennifer B. McCormick, Nathaniel D. Mercaldo, Melanie F. Myers, Saskia C. Sanderson, Martha J. Shrubsole, Jonathan S. SchildcroutJanet L. Williams, Maureen E. Smith, Ellen Wright Clayton, Ingrid A. Holm

Research output: Contribution to journalArticle

Abstract

Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks.

Original languageEnglish (US)
Pages (from-to)128-142
Number of pages15
JournalAJOB Empirical Bioethics
Volume9
Issue number3
DOIs
StatePublished - Jul 3 2018

Fingerprint

Information Dissemination
parents
Parents
Privacy
scenario
privacy
Surveys and Questionnaires
Consent
Biobank
Health Insurance
household income
insurance
Public Health
public health
confidence
Willingness
Confidence Intervals
health care
Pediatrics
Delivery of Health Care

All Science Journal Classification (ASJC) codes

  • Health(social science)
  • Philosophy
  • Health Policy

Cite this

Antommaria, A. H. M., Brothers, K. B., Myers, J. A., Feygin, Y. B., Aufox, S. A., Brilliant, M. H., ... Holm, I. A. (2018). Parents’ attitudes toward consent and data sharing in biobanks: A multisite experimental survey. AJOB Empirical Bioethics, 9(3), 128-142. https://doi.org/10.1080/23294515.2018.1505783
Antommaria, Armand H.Matheny ; Brothers, Kyle B. ; Myers, John A. ; Feygin, Yana B. ; Aufox, Sharon A. ; Brilliant, Murray H. ; Conway, Pat ; Fullerton, Stephanie M. ; Garrison, Nanibaa’ A. ; Horowitz, Carol R. ; Jarvik, Gail P. ; Li, Rongling ; Ludman, Evette J. ; McCarty, Catherine A. ; McCormick, Jennifer B. ; Mercaldo, Nathaniel D. ; Myers, Melanie F. ; Sanderson, Saskia C. ; Shrubsole, Martha J. ; Schildcrout, Jonathan S. ; Williams, Janet L. ; Smith, Maureen E. ; Clayton, Ellen Wright ; Holm, Ingrid A. / Parents’ attitudes toward consent and data sharing in biobanks : A multisite experimental survey. In: AJOB Empirical Bioethics. 2018 ; Vol. 9, No. 3. pp. 128-142.
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abstract = "Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8{\%} response rate). 5737 respondents were parents of minor children. Overall, 55{\%} (95{\%} confidence interval 50–59{\%}) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25{\%} were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks.",
author = "Antommaria, {Armand H.Matheny} and Brothers, {Kyle B.} and Myers, {John A.} and Feygin, {Yana B.} and Aufox, {Sharon A.} and Brilliant, {Murray H.} and Pat Conway and Fullerton, {Stephanie M.} and Garrison, {Nanibaa’ A.} and Horowitz, {Carol R.} and Jarvik, {Gail P.} and Rongling Li and Ludman, {Evette J.} and McCarty, {Catherine A.} and McCormick, {Jennifer B.} and Mercaldo, {Nathaniel D.} and Myers, {Melanie F.} and Sanderson, {Saskia C.} and Shrubsole, {Martha J.} and Schildcrout, {Jonathan S.} and Williams, {Janet L.} and Smith, {Maureen E.} and Clayton, {Ellen Wright} and Holm, {Ingrid A.}",
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Antommaria, AHM, Brothers, KB, Myers, JA, Feygin, YB, Aufox, SA, Brilliant, MH, Conway, P, Fullerton, SM, Garrison, NA, Horowitz, CR, Jarvik, GP, Li, R, Ludman, EJ, McCarty, CA, McCormick, JB, Mercaldo, ND, Myers, MF, Sanderson, SC, Shrubsole, MJ, Schildcrout, JS, Williams, JL, Smith, ME, Clayton, EW & Holm, IA 2018, 'Parents’ attitudes toward consent and data sharing in biobanks: A multisite experimental survey', AJOB Empirical Bioethics, vol. 9, no. 3, pp. 128-142. https://doi.org/10.1080/23294515.2018.1505783

Parents’ attitudes toward consent and data sharing in biobanks : A multisite experimental survey. / Antommaria, Armand H.Matheny; Brothers, Kyle B.; Myers, John A.; Feygin, Yana B.; Aufox, Sharon A.; Brilliant, Murray H.; Conway, Pat; Fullerton, Stephanie M.; Garrison, Nanibaa’ A.; Horowitz, Carol R.; Jarvik, Gail P.; Li, Rongling; Ludman, Evette J.; McCarty, Catherine A.; McCormick, Jennifer B.; Mercaldo, Nathaniel D.; Myers, Melanie F.; Sanderson, Saskia C.; Shrubsole, Martha J.; Schildcrout, Jonathan S.; Williams, Janet L.; Smith, Maureen E.; Clayton, Ellen Wright; Holm, Ingrid A.

In: AJOB Empirical Bioethics, Vol. 9, No. 3, 03.07.2018, p. 128-142.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Parents’ attitudes toward consent and data sharing in biobanks

T2 - A multisite experimental survey

AU - Antommaria, Armand H.Matheny

AU - Brothers, Kyle B.

AU - Myers, John A.

AU - Feygin, Yana B.

AU - Aufox, Sharon A.

AU - Brilliant, Murray H.

AU - Conway, Pat

AU - Fullerton, Stephanie M.

AU - Garrison, Nanibaa’ A.

AU - Horowitz, Carol R.

AU - Jarvik, Gail P.

AU - Li, Rongling

AU - Ludman, Evette J.

AU - McCarty, Catherine A.

AU - McCormick, Jennifer B.

AU - Mercaldo, Nathaniel D.

AU - Myers, Melanie F.

AU - Sanderson, Saskia C.

AU - Shrubsole, Martha J.

AU - Schildcrout, Jonathan S.

AU - Williams, Janet L.

AU - Smith, Maureen E.

AU - Clayton, Ellen Wright

AU - Holm, Ingrid A.

PY - 2018/7/3

Y1 - 2018/7/3

N2 - Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks.

AB - Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks.

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