Should genetic testing for BRCA1/2 be permitted for minors? Opinions of BRCA mutation carriers and their adult offspring

Although professional guidelines recommend against testing minors for adult‐onset genetic conditions, the genetic testing of minors for BRCA1/2 alterations has been debated in the literature. To better understand the opinions of BRCA mutation carriers regarding the genetic testing of minors and the cognitive and affective processes underlying these opinions, we interviewed BRCA mutation carriers and their adult offspring who had learned of their parent's BRCA mutation. Semi‐structured interviews were conducted with 53 parents and 22 offspring. In response to a closed‐ended question, 52% (n = 39) of participants were opposed to the testing of minors. Responses to an open‐ended question indicate that many participants (24%, n = 18) feel that testing could be permitted for some minor offspring. Psychological risks and the insufficient maturity of minors were frequent concerns of participants opposed to testing minors. The potential to impact health behaviors was frequently cited as a reason to support the genetic testing of minors. These preliminary results suggest that many BRCA mutation carriers and their adult offspring have concerns about, or are opposed to the genetic testing of minors. However, a significant minority in our study would support testing minors. Greater support for testing among offspring could indicate increasing requests for early genetic diagnosis. Further research is necessary to explore the risks and benefits of providing genetic testing to minors for adult‐onset hereditary cancer syndromes in order to inform clinical practice and public policy and to ensure optimal psychosocial and medical outcomes for all members in families at risk for genetically determined disease. © 2008 Wiley‐Liss, Inc.

[1]  B. Wilfond,et al.  Ethical issues with genetic testing in pediatrics. , 2013, Pediatrics.

[2]  O. Olopade,et al.  How often do BRCA mutation carriers tell their young children of the family's risk for cancer? A study of parental disclosure of BRCA mutations to minors and young adults. , 2007, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[3]  S. Barnoy.  Genetic testing for late-onset diseases: effect of disease controllability, test predictivity, and gender on the decision to take the test. , 2007, Genetic testing.

[4]  FH Richards.  Maturity of judgement in decision making for predictive testing for nontreatable adult‐onset neurogenetic conditions: a case against predictive testing of minors , 2006, Clinical genetics.

[5]  R. Rhodes.  Why test children for adult-onset genetic diseases? , 2006, The Mount Sinai journal of medicine, New York.

[6]  J. Savulescu,et al.  An international survey of predictive genetic testing in children for adult onset conditions , 2005, Genetics in Medicine.

[7]  R. Eeles,et al.  Men’s Decision-Making About Predictive BRCA1/2 Testing: The Role of Family , 2005, Journal of Genetic Counseling.

[8]  C. Gaff,et al.  Facilitating Family Communication About Predictive Genetic Testing: Probands’ Perceptions , 2005, Journal of Genetic Counseling.

[9]  Jane Wardle,et al.  Public interest in genetic testing for susceptibility to heart disease and cancer: a population-based survey in the UK. , 2004, Preventive medicine.

[10]  G. Spiridigliozzi,et al.  “Family Matters”: A Conceptual Framework for Genetic Testing in Children , 2004, Journal of Genetic Counseling.

[11]  Adopted on March.  American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility. , 2003, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[12]  J. Hopper,et al.  Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case Series unselected for family history: a combined analysis of 22 studies. , 2003, American journal of human genetics.

[13]  R. Eeles,et al.  Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information , 2003, Journal of medical ethics.

[14]  L. Koehly,et al.  A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. , 2003, Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology.

[15]  Gail Geller,et al.  Parents' and children's attitudes toward the enrollment of minors in genetic susceptibility research: Implications for informed consent , 2003, American journal of medical genetics. Part A.

[16]  P. Devilee,et al.  Men at risk of being a mutation carrier for hereditary breast/ovarian cancer: an exploration of attitudes and psychological functioning during genetic testing , 2001, European Journal of Human Genetics.

[17]  L. d'Agincourt-Canning.  Experiences of genetic risk: disclosure and the gendering of responsibility. , 2001, Bioethics.

[18]  S. Robertson,et al.  Is There a Case in Favour of Predictive Genetic Testing in Young Children? , 2001, Bioethics.

[19]  R. Croyle,et al.  Attitudes toward the genetic testing of children among adults in a Utah-based kindred tested for a BRCA1 mutation. , 2000, American journal of medical genetics.

[20]  B. Elger,et al.  Testing adolescents for a hereditary breast cancer gene (BRCA1): respecting their autonomy is in their best interest. , 2000, Archives of pediatrics & adolescent medicine.

[21]  E. Kodish.  Testing children for cancer genes: the rule of earliest onset. , 1999, The Journal of pediatrics.

[22]  A. Clarke.  The Genetic Testing of Children , 1998 .

[23]  Cynthia B. Cohen.  Wrestling with the Future: Should We Test Children for Adult-Onset Genetic Conditions? , 1998, Kennedy Institute of Ethics journal.

[24]  J Chang-Claude,et al.  Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium. , 1998, American journal of human genetics.

[25]  J. Benkendorf,et al.  Patients' attitudes about autonomy and confidentiality in genetic testing for breast-ovarian cancer susceptibility. , 1997, American journal of medical genetics.

[26]  P. Reilly,et al.  Laboratory policies and practices for the genetic testing of children: a survey of the Helix network. , 1997, American journal of human genetics.

[27]  M. Andrykowski,et al.  Hereditary cancer risk notification and testing: how interested is the general population? , 1997, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[28]  E. Thomson,et al.  Recommendations for follow-up care of individuals with an inherited predisposition to Cancer. II. BRCA1 and BRCA2 , 1997 .

[29]  K Offit,et al.  Recommendations for follow-up care of individuals with an inherited predisposition to cancer. II. BRCA1 and BRCA2. Cancer Genetics Studies Consortium. , 1997, JAMA.

[30]  E. Thomson,et al.  Recommendations for follow-up care of individuals with an inherited predisposition to cancer. I. Hereditary nonpolyposis colon cancer. Cancer Genetics Studies Consortium. , 1997, JAMA.

[31]  P. Harper,et al.  Huntington's disease predictive testing: the case for an assessment approach to requests from adolescents. , 1996, Journal of medical genetics.

[32]  M. McCabe,et al.  Involving children and adolescents in medical decision making: developmental and clinical considerations. , 1996, Journal of pediatric psychology.

[33]  A. Patenaude,et al.  Attitudes of 47 mothers of pediatric oncology patients toward genetic testing for cancer predisposition. , 1996, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[34]  R. Lebel.  Genetic testing for children and adolescents. , 1995, JAMA.

[35]  Lori B. Andrews,et al.  Assessing Genetic Risks: Implications for Health and Social Policy , 1994 .

[36]  A. Clarke,et al.  The genetic testing of children. Working Party of the Clinical Genetics Society (UK) , 1994, Journal of medical genetics.

[37]  S. Bach,et al.  The ethics of decision making with adolescents: what a physician ought to know. , 1994, Adolescent Medicine.

[38]  P. Reilly,et al.  Genetic testing for children and adolescents. Who decides? , 1994, JAMA.

[39]  Pamela Jordan.  Basics of qualitative research: Grounded theory procedures and techniques , 1994 .

[40]  K. Quaid.  Reply to Sharpe , 1994 .

[41]  N. Sharpe.  Presymptomatic testing for Huntington disease: is there a duty to test those under the age of eighteen years? , 1993, American journal of medical genetics.

[42]  G. Legwold,et al.  THE AMERICAN ACADEMY OF PEDIATRICS , 1982, The Physician and sportsmedicine.

[43]  G. Geller,et al.  Mothers and daughters from breast cancer families: a qualitative study of their perceptions of risks and benefits associated with minor's participation in genetic susceptibility research. , 2000, Journal of the American Medical Women's Association.

[44]  S. Michie.  Predictive genetic testing in children: paternalism or empiricism? , 1996 .

[45]  T. Marteau,et al.  The troubled helix: Acknowledgements , 1996 .

[46]  M. Richards.  The troubled helix: Families, kinship and genetics , 1996 .

[47]  Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Society of Human Genetics Board of Directors, American College of Medical Genetics Board of Directors. , 1995, American journal of human genetics.

[48]  E. Juengst.  Ethics of prediction: genetic risk and the physician-patient relationship. , 1995, Genome science & technology.

[49]  K. Quaid.  Presymptomatic testing for Huntington disease: reply to Sharpe. , 1994, American journal of medical genetics.

[50]  C. Pechura,et al.  From the Institute of Medicine. , 1993, JAMA.

[51]  M. Hayden,et al.  Opinion: predictive testing for Huntington disease in childhood: challenges and implications. , 1990, American journal of human genetics.