Ethical issues in identifying and recruiting participants for familial genetic research

Laura M. Beskow, Jeffrey R. Botkin, Mary Daly, Eric T. Juengst, Lisa Soleymani Lehmann, Jon F. Merz, Rebecca Pentz, Nancy A. Press, Lainie Friedman Ross, Jeremy Sugarman, Lisa R. Susswein, Sharon F. Terry, Melissa A. Austin, Wylie Burke

Research output: Contribution to journalArticle

Abstract

Family-based research is essential to understanding the genetic and environmental etiology of human disease. The success of family-based research often depends on investigators' ability to identify, recruit, and achieve a high participation rate among eligible family members. However, recruitment of family members raises ethical concerns due to the tension between protecting participants' privacy and promoting research quality, and guidelines for these activities are not well established. The Cancer Genetics Network Bioethics Committee assembled a multi-disciplinary group to explore the scientific and ethical issues that arise in the process of family-based recruitment. The group used a literature review as well as expert opinion to develop recommendations about appropriate approaches to identifying, contacting, and recruiting family members. We conclude that there is no single correct approach, but recommend a balanced approach that takes into account the nature of the particular study as well as its recruitment goals. Recruitment of family members should be viewed as part of the research protocol and should require appropriate informed consent of the already-enrolled participant. Investigators should inform prospective participants why they are being contacted, how information about them was obtained, and what will happen to that information if they decide not to participate. The recruitment process should also be sensitive to the fact that some individuals from families at increased genetic risk will have no prior knowledge of their risk status. These recommendations are put forward to promote further discussion about the advantages and disadvantages of various approaches to family-based recruitment. They suggest a framework for considering alternative recruitment strategies and their implications, as well as highlight areas in need of further empirical research.

Original languageEnglish (US)
Pages (from-to)424-431
Number of pages8
JournalAmerican Journal of Medical Genetics
Volume130 A
Issue number4
DOIs
StatePublished - Nov 1 2004

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Genetic Research
Ethics
Research Personnel
Bioethics
Empirical Research
Aptitude
Privacy
Expert Testimony
Informed Consent
Research
Guidelines

Keywords

  • Cancer
  • Ethics
  • Family-based research
  • Genetics
  • Research recruitment

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

Beskow, L. M., Botkin, J. R., Daly, M., Juengst, E. T., Lehmann, L. S., Merz, J. F., ... Burke, W. (2004). Ethical issues in identifying and recruiting participants for familial genetic research. American Journal of Medical Genetics, 130 A(4), 424-431. https://doi.org/10.1002/ajmg.a.30234

Ethical issues in identifying and recruiting participants for familial genetic research. / Beskow, Laura M.; Botkin, Jeffrey R.; Daly, Mary; Juengst, Eric T.; Lehmann, Lisa Soleymani; Merz, Jon F.; Pentz, Rebecca; Press, Nancy A.; Ross, Lainie Friedman; Sugarman, Jeremy; Susswein, Lisa R.; Terry, Sharon F.; Austin, Melissa A.; Burke, Wylie.

In: American Journal of Medical Genetics, Vol. 130 A, No. 4, 01.11.2004, p. 424-431.

Research output: Contribution to journalArticle

Beskow, LM, Botkin, JR, Daly, M, Juengst, ET, Lehmann, LS, Merz, JF, Pentz, R, Press, NA, Ross, LF, Sugarman, J, Susswein, LR, Terry, SF, Austin, MA & Burke, W 2004, 'Ethical issues in identifying and recruiting participants for familial genetic research', American Journal of Medical Genetics, vol. 130 A, no. 4, pp. 424-431. https://doi.org/10.1002/ajmg.a.30234
Beskow, Laura M. ; Botkin, Jeffrey R. ; Daly, Mary ; Juengst, Eric T. ; Lehmann, Lisa Soleymani ; Merz, Jon F. ; Pentz, Rebecca ; Press, Nancy A. ; Ross, Lainie Friedman ; Sugarman, Jeremy ; Susswein, Lisa R. ; Terry, Sharon F. ; Austin, Melissa A. ; Burke, Wylie. / Ethical issues in identifying and recruiting participants for familial genetic research. In: American Journal of Medical Genetics. 2004 ; Vol. 130 A, No. 4. pp. 424-431.
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