Ethical issues arising from the participation of children in genetic research
Section snippets
Genetics as a predictor of the future
Genetics is commonly cited as the source of powerful information about the future. Common metaphors for the human genome—a “blueprint,”1 an “instruction book,”2 a “future diary,”3—support this vision, leading to a “DNA mystique” that makes an exaggerated claim for the role of genetics in determining a person’s health and life experience.4 Similarly, gene-disease associations are often reported in a way that suggests genetic determinism—as in the report, for example, of the discovery of “the
Gene discovery
As would be expected from the public discussion, much genetic research is focused on the identification of genetic contributors to health and disease. This research rarely provides therapeutic benefit in itself, but it may have important predictive and therapeutic implications. An example is the retrospective analysis of clinical trial data on childhood acute lymphoblastic leukemia to assess the relationship between thiopurine methyltransferase (TPMT) level and bone marrow toxicity.11 Low
Personal and group stigma
One of the concerns often expressed about genetic information is the potential that the identification of a genetic predisposition could result in stigma. This concern may be greatest for genetic risks related to psychiatric problems or undesirable behaviors.24 An example illustrates some of the questions raised by behavioral genetic studies. A prospective follow-up of a birth cohort initially enrolled at 3 years of age most recently reported follow-up at 26 years of age, when a DNA sample was
Providing results to participants
Unless a study procedure or test is proven to be valid, and knowledge of the result would allow a therapeutic opportunity of demonstrated benefit, researchers have traditionally not provided participants with personal results of tests done exclusively for study purposes. Instead, participants learn about study outcomes through reports or publication of aggregate data. This approach reflects a societal understanding, incorporated into the informed consent process, that most biomedical research
Conclusions
None of the ethical concerns that arise in pediatric genetic research are unique. However, certain concerns are more common in genetic research because of the study designs used for gene discovery. In addition, the power often accorded to genetic information in our society generates additional concern when a research study involves collection of genetic information.
Both family-based studies and large population-based studies incorporating genetic data pose challenges to the informed consent
References (39)
- et al.
Challenges in communicating geneticsa public health approach
Genet Med
(2000) - et al.
Pharmacogenetics of outcome in children with acute lymphoblastic leukemia
Blood
(2005) Ethical concerns in the research and treatment of complex disease
Trends Genet
(1995)- et al.
Ethical issues associated with conducting genetic family studies of complex disease
Ann Epidemiol
(2005) - et al.
The emerging importance of genetics in epidemiologic research, Ibasic concepts in human genetics and laboratory technology
Ann Epidemiol
(1999) - et al.
Monitoring ethical, legal, and social issues in developing population genetic databases
Genet Med
(2003) - et al.
Moderation of the effect of adolescent-onset cannabis use on adult psychosis by a functional polymorphism in the catechol-O-methyltransferase genelongitudinal evidence of a gene X environment interaction
Biol Psychiatry
(2005) - Clark C. Blueprint of the Body. On the threshold of a rave new world. CNN.com. Available online at:...
- Collins FS, quoted in International Consortium Completes Human Genome Project. National Human Genome Research...
- et al.
Drafting the genetic privacy actscience, policy, and practical considerations
J Law Med Ethics
(1995)
The DNA MystiqueThe Gene as a Cultural Icon
The media and public reaction to genetic research
JAMA
Genetic exceptionalism and “future diaries”is genetic information different from other medical information?
The ethics of predictiongenetic risk and the physician-patient relationship
Genome Science Tech
Mercaptopurine therapy intolerance and heterozygosity at the thiopurine S-methyltransferase gene locus
JNCI
Genomics as probe for disease biology
New Engl J Med
Ethical issues in identifying and recruiting participants for familial genetic research
Am J Med Genet
Cited by (53)
Ethical review of biobank research: Should RECs review each release of material from biobanks operating under an already-approved broad consent and data protection model?
2015, European Journal of Medical GeneticsCitation Excerpt :C) Stigmatisation and intercultural competence: Genetic analysis is a common component of biobank research. Some results, even some research questions in the context of genetics, have the potential to stigmatise certain groups of people or violate their cultural values (Harmon, 2010; Shaw et al., 2013; Burke and Diekema, 2006). Accordingly, specific precautionary measures may be required to avoid burdens on those people directly or indirectly affected, insofar as this is possible, even if these associated effects were not intended by the researchers.
Attitudes of parents toward the return of targeted and incidental genomic research findings in children
2014, Genetics in MedicineThe beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository
2012, Genetics in MedicineCitation Excerpt :In addition, there is a concern that the return of IRRs blurs the distinction between research and clinical care and may elicit a therapeutic or diagnostic misconception among participants.7 Opinions about the involvement of children in large-cohort genetic studies are mixed, and both public opinion studies and professional editorials raise a number of ethical concerns,8,9,10,11 which center around the child’s transition from partial to full autonomy. Issues include the need to obtain meaningful assent from minors, and full informed consent when the child turns 18 years of age, in order to ensure their continued participation in the study.
IRB perspectives on the return of individual results from genomic research
2012, Genetics in MedicineCitation Excerpt :Research is meant to benefit society, not the individual research subject. Yet, in our study, and in society today, “a special power was associated with genomic information.”39 Our respondents expected that genomic or genetic studies would provide important clinical information for the research participant.
Insights into National Laboratory Newborn Screening and Future Prospects
2022, Medicina (Lithuania)Re-contact following Withdrawal of Minors from Research
2022, Canadian Journal of Bioethics
Supported in part by the University of Washington NHGRI sponsored Center for Genomics and Healthcare Equality Grant #: NHGRI P50HG03374.