Ethical Issues in Psychiatric Genetics. Paul S. Appelbaum, M.D. Dollard Professor of Psychiatry, Medicine and Law Director, Division of Psychiatry, Law and Ethics Department of Psychiatry College of Physicians and Surgeons Columbia University. Key Aspects of Psychiatric Genetics - 1.
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Paul S. Appelbaum, M.D.
Dollard Professor of Psychiatry, Medicine and Law
Director, Division of Psychiatry, Law and Ethics
Department of Psychiatry
College of Physicians and Surgeons
Most disorders studied have shown some degree of hereditability, indicating a genetic contribution to causation
bipolar disorder has a hereditability of 0.8
i.e., 80% of the variance in transmission is attributable to genetic factors
(Cowan, et al., 2002)
No psychiatric disorder is entirely determined by genetic factors
Even monozygotic twins show only 50% concordance for schizophrenia, indicating a substantial non-genetic contribution.
(Rutter & Silberg, 2002)
(Caspi, et al. 2003)
- Current practices would appear to permit this, even if risk is very low—fetal or preimplantation
- But systematic removal of alleles will reduce positive effects of carrier state for the population as a whole
- Example may be increased creativity apparently associated with mood disorders
(DeLisi &Bertisch, 2006)
- Nuffield Report suggests answer is no, unless intervention is possible
- But would “avoiding stress” be enough of an intervention to warrant testing for 5-HTT alleles?
- And what would negative impact be of “protecting” vulnerable children?
- Rates of psychopathology elevated in adoptive children
- Risk of creating group of “genetically tainted” unadoptables must be balanced against adoptive parents’ “right to know”
(DeLisi and Bertisch, 2006)
- Answer may depend on possibility of intervention, but also to desire to avoid reproduction
- Perhaps market will provide the answer
* Only 10% of people whose parents have Huntington’s disease are ever tested (Nuffield Report, 1998)
* Suggests widespread fear of negative impact of knowledge
- Positive results may be misinterpreted without genetic counseling
- But such tests are already being aggressively promoted, e.g., for genes related to breast cancer, hypercholesterolemia, Gaucher’s disease, etc.
- How well will patients be able to use this information?
(Gurmankin et al., 2005)
- Tay-Sachs registry may be model here
- Allowing decisions on this basis may create a class of uninsurables
- But advocates argue that accurate estimation of risk is the only fair basis for all underwriting – avoids “moral hazard”
- Compulsory testing by insurers has even been suggested (Raithatha & Smith, 2004)
- But in UK insurers agreed to moratorium until 2011
- 25% refused life insurance
- 22% refused health insurance
- 13% turned down for a job
- Safer v. Pack (NJ) – duty to warn in familial polyposis
- Pate v. Threlkel (FL) – duty to warn in medullary cancer of the thyroid—OK to warn pt.
- Unless effect on risk is substantial and intervention possible, consensus is that they should not
- Again, generally not
- This applies especially to data on paternity
- OPRR response to MCV case suggests answer
- Discovery of MAOA variant that predisposes to violence makes this a live issue (Brunner, et al., 1993; Caspi, et al., 2002)
- But it would be odd to reduce punishment for those most likely to reoffend
- Predictive power of any single allele will be small
- Environmental influences will play major role in outcome
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Caspi A, et al.: Role of genotype in the cycle of violence in maltreated children. Science 297:851-854, 2002.
Clayton EW: Ethical, legal, and social implications of genomic medicine. N Engl J Med 349:562-9, 2003.
Cowan WM, Kopnisky KL, Hyman SE: The Human Genome Project and its impact on psychiatry. Annu Rev Neurosci 25:1-50, 2002.
Deftos LJ: The evolving duty to disclose the presence of genetic disease to relatives. Acad Med 73:962-8, 1998.
DeLisi L, Bertisch H: A preliminary comparison of the hopes of researchers, clinicians, and families for the future ethical use of genetic findings on schizophrenia. Am J Med Gen 141B:110-115, 2006.
Gurmankin AD, Domchek S, Stopfer J, et al.: Patients’ resistance to risk information in genetic counseling for BRCA 1/2. Arch Intern Med 165:523-529, 2005.
Lapham EV, Kezma C, Weiss JO: Genetic discrimination: perspectives of consumers. Science 274:621-624, 1996.
Nuffield Council on Bioethics: Mental Disorders and Genetics. The Ethical Context. September 1998. http://www.nuffieldbioethics.org/mentaldisorders/index.asp
Parker LS: Ethical issues in bipolar disorders pedigree research: privacy concerns, informed consent, and grounds for waiver. Bipolar Disord 4:1-16, 2002.
Pate v. Threlkel, 661 So.2d 278 (Fla. 1995)
Plomin R, McGuffin P: Psychopathologyin the postgenomic era. Annu Rev Psychol 54:205-28, 2003.
Raithatha N, Smith RD: Disclosure of genetic tests for health insurance: is it ethical not to? Lancet 363:395-6, 2004.
Rutter M, Silberg J: Gene-environment interplay in relation to emotional and behavioral disturbance. Annu Rev Psychol 53:463-590, 2002.
Safer v. Pack, 677 A.2d 1188 (N.J. App. 1996).
Wong JG, Lieh-Mak F: Genetic discrimination and mental illness: a case report. J Med Ethics 27:393-397, 2001.