Article

Ethical implications of including children in a large biobank for genetic-epidemiologic research: A qualitative study of public opinion†

  1. David Kaufman‡,*,
  2. Gail Geller§,
  3. Lisa LeRoy,
  4. Juli Murphy‖,
  5. Joan Scott††,
  6. Kathy Hudson‡‡

Article first published online: 11 JAN 2008

DOI: 10.1002/ajmg.c.30159

Issue

American Journal of Medical Genetics Part C: Seminars in Medical Genetics

American Journal of Medical Genetics Part C: Seminars in Medical Genetics

Special Issue: Children and Genetics: Ethics and Policy

Volume 148C, Issue 1, pages 31–39, 15 February 2008

Additional Information

How to Cite

Kaufman, D., Geller, G., LeRoy, L., Murphy, J., Scott, J. and Hudson, K. (2008), Ethical implications of including children in a large biobank for genetic-epidemiologic research: A qualitative study of public opinion. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 148C: 31–39. doi: 10.1002/ajmg.c.30159

Author Information

  1. ‡

    David Kaufman, Ph.D., is a Project Director at the Genetics and Public Policy Center, at Johns Hopkins University in Washington DC. His research interests include the use and governance of biobanks, public engagement in genetics, the quality of genetic testing, and genetics in public health.

  2. §

    Gail Geller, Sc.D., M.H.S., is an Associate Professor at the Johns Hopkins School of Medicine, with primary affiliations in the Berman Institute of Bioethics and the Department of Medicine. She has joint appointments in the Department of Pediatrics, the Institute of Genetic Medicine and the Bloomberg School of Public Health's Department of Health, Behavior & Society. Her research focuses on communication, decision-making and informed consent for genetic testing in the adult, pediatric and family contexts.

  3. Lisa LeRoy, MBA, Ph.D., is a Senior Associate at Abt Associates in Cambridge, MA. where she leads the Qualitative Methods and Analytics group. Substantive areas of Dr. LeRoy's research include patient-centered care, reproductive health, HIV/AIDS, and genetics.

  4. ‖

    Juli Murphy, M.S. is the Project Director for the NHGRI Public Engagement Project at the Genetics and Public Policy Center. She is a genetic counselor with over 10 years experience in clinical genetics and molecular diagnostics whose research interests include the effective conduct of clinical and research genetics, and the regulation and quality of genetic testing.

  5. ††

    Joan Scott. M.S., C.G.C., is Deputy Director of the Genetics and Public Policy Center and Research Scientist in the Berman Institute of Bioethics at Johns Hopkins University. Her research interests include public engagement on genetics, the translation of genetic testing into clinical practice and the development of clinical practice guidelines, and genetics education for healthcare professionals.

  6. ‡‡

    Kathy Hudson, Ph.D., is the founder and director of the Genetics and Public Policy Center and an Associate Professor in the Berman Institute of Bioethics at Johns Hopkins University, Institute of Genetic Medicine, and the Department of Pediatrics at The Johns Hopkins University. She leads the Center's efforts to address legal, ethical, and policy issues related to human reproductive genetic technologies, genetic testing quality and oversight, and public engagement in genetic research.

*1717 Massachusetts Ave., NW, Suite 530, Washington, DC 20036.

  1. †

    How to cite this article: Kaufman D, Geller G, LeRoy L, Murphy J, Scott J, Hudson K. 2008. Ethical implications of including children in a large biobank for genetic-epidemiologic research: A qualitative study of public opinion. Am J Med Genet Part C Semin Med Genet 148C:31–39.

Publication History

  1. Issue published online: 23 JAN 2008
  2. Article first published online: 11 JAN 2008

Funded by

  • National Human Genome Research Institute. Grant Number: 1 U01 HG004206-0
  • Public Consultation to Inform the Design of Possible Large-Scale Studies of Genes and Environment in Common Disease

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Keywords:

  • children;
  • community engagement;
  • genetics;
  • public opinion;
  • focus groups;
  • cohort study

Abstract

The National Institutes of Health and other federal agencies are considering initiating a cohort study of 500,000 people, including 120,000 children, to measure genetic and environmental influences on common diseases. A community engagement pilot study was conducted to identify public attitudes and concerns about the proposed cohort study, including the ethics of involving children. The pilot included 15 focus groups where the inclusion of children in the proposed cohort study was discussed. Focus groups, conducted in six cities, included 141 adults of different ages, incomes, genders, ethnicities, and races. Many of the concerns expressed by participants mirrored those addressed in pediatric research guidelines. These concerns included minimizing children's fear, pain, and burdens; whether to include young children; and how to obtain children's assent. There was little agreement about which children can assent. Some voiced concern about children's privacy, but most expected that parents would have access to children's study results. Some believed children would not benefit from participating, while others identified personal and societal benefits that might accrue. A few people believed that children's participation would not advance the study's goals. To successfully include children, proposed cohort study would need to address children's changing capabilities and rights as they grow and reach the age of consent. © 2008 Wiley-Liss, Inc.

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