Ethical Obligations and Counseling Challenges in Cancer Genetics

Authors:
Wylie BurkeFrom the University of Washington, Seattle, Washington, and Oregon Health and Science University, Portland, Oregon.

Search for other papers by Wylie Burke in
Current site
Google Scholar
PubMed
Close
 MD, PhD
and
Nancy PressFrom the University of Washington, Seattle, Washington, and Oregon Health and Science University, Portland, Oregon.

Search for other papers by Nancy Press in
Current site
Google Scholar
PubMed
Close
 PhD
Full access

Cancer genetics is creating new practice opportunities in medical genetics, oncology, and primary care. The ethical and counseling challenges of this new area of practice are not unique but sometimes take new form in the context of genetic risk. This article uses cases to explore the issues associated with shared family risk, including competing concerns of family members, duty to warn relatives of genetic risk, and testing of children and other relatives. The ethical obligations of clinicians start with the need to maintain competence in the face of rapidly evolving science. Clinicians should be able to identify patients within their practice who are candidates for genetic testing. When genetic susceptibility to cancer is identified, patients should be offered counseling and follow-up, with referral as appropriate, to ensure delivery of care consistent with current standards. When patients experience barriers to needed health care, clinicians should advocate for their needs. Clinicians must ensure the autonomy and informed decision-making of all members of cancer-prone families. Clinicians must also provide emotional support and accurate information about cancer risks and cancer risk reduction measures, including uncertainties. Teamwork among different specialties is important in addressing these challenges.

Correspondence to: Wylie Burke, MD, PhD, Department of Medical History and Ethics, University of Washington, Box 356120, 1959 NE Pacific, Room A204, Seattle, WA 98195-7120. E-mail: wburke@u.washington.edu
  • Collapse
  • Expand
  • 1.

    Queller J. Cancer and the maiden. NY Times National Edition, Mar 5, 2005.

  • 2.

    Crawshaw R, Rogers DE, Pellegrino ED et al.. Patient-physician covenant. JAMA 1995;273:1553.

  • 3.

    Pellegrino ED. The internal morality of clinical medicine: a paradigm for the ethics of the helping and healing physicians. J Med Phil 2001;26:559579.

    • Search Google Scholar
    • Export Citation
  • 4.

    Patenaude AF. Genetic Testing for Cancer: Psychological Approaches for Helping Patients and Families. Washington, DC: American Psychological Association; 2005.

    • Search Google Scholar
    • Export Citation
  • 5.

    Antoniou A, Pharoah PD, Narod S 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. Am J Hum Genet 2003;72:11171130.

    • Search Google Scholar
    • Export Citation
  • 6.

    Rebbeck TR, Lynch HT, Neuhausen SL et al.. Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. N Engl J Med 2002;346:16161622.

  • 7.

    Kauff ND, Satagopan JM, Robson ME et al.. Risk-reducing salpingo-oophorectomy in women with a BRCA1 or BRCA2 mutation. N Engl J Med 2002;346:16091615.

    • Search Google Scholar
    • Export Citation
  • 8.

    Press N, Reynolds S, Pinsky L et al.. `That's like chopping off a finger because you're afraid it might get broken': disease and illness in women's views of prophylactic mastectomy. Soc Sci Med 2005;61:11061117.

    • Search Google Scholar
    • Export Citation
  • 9.

    Wainberg S, Husted J. Utilization of screening and preventive surgery among unaffected carriers of a BRCA1 or BRCA2 gene mutation. Cancer Epidemiol Biomarkers Prev 2004;13:19891995.

    • Search Google Scholar
    • Export Citation
  • 10.

    Liberman L. Breast cancer screening with MRI—what are the data for patients at high risk? N Engl J Med 2004;351:497500.

  • 11.

    Nelson HD, Huffman LH, Fu R, Harris EL. Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: systematic evidence review for the U.S. Preventive Services Task Force. Ann Intern Med 2005;142:362–379. Erratum in Ann Intern Med 2005;143:547.

    • Search Google Scholar
    • Export Citation
  • 12.

    Myriad Genetic Laboratories. BRACAnalysisÆ Techincal Specifications. Available at: http://www.myriadtests.com/provider/doc/tech_specs_brac.pdf. Accessed December 2005.

    • Search Google Scholar
    • Export Citation
  • 13.

    Schneider KA, Li F. Li-Fruameni syndrome. Available at: http://www.geneclinics.org/servlet/access?db=geneclinics&site=gt&id=8888891&key=4vpwoPBUz29Za&gry=&fcn=y&fw=jzon&filename=/profiles/li-fraumeni/index.html. Accessed December 2005.

    • Search Google Scholar
    • Export Citation
  • 14.

    Lindor NM, Greene MHMayo Familial Cancer Program. The concise handbook of family cancer syndromes. J Natl Cancer Inst 1998;90:10391071.

    • Search Google Scholar
    • Export Citation
  • 15.

    Suriano G, Yew S, Ferreira P et al.. Characterization of a recurrent germ line mutation of the e-cadherin gene: implications for genetic testing and clinical management. Clin Cancer Res 2005;11:54015409.

    • Search Google Scholar
    • Export Citation
  • 16.

    Rich EC, Burke W, Heaton CJ et al.. Revitalizing the family history in primary care. J Gen Intern Med 2004;19:273280.

  • 17.

    Whelan AJ, Ball S, Best L et al.. Genetic red flags: clues to thinking genetically in primary care practice. Prim Care 2004;31:497508.

  • 18.

    GeneTests Home page. Available at: http://www.genetests.org/. Accessed December 2005.

  • 19.

    National Caner Institute. PDQ® Cancer Information Summaries: Genetics. Available at: http://www.nci.nih.gov/cancertopics/pdq/genetics. Accessed December 2005.

    • Search Google Scholar
    • Export Citation
  • 20.

    American Society of Clinical Oncology. Resource document for curriculum development in cancer genetics education. J Clin Oncol 1997;15:21572169.

    • Search Google Scholar
    • Export Citation
  • 21.

    National Comprehensive Cancer Network Clinical Practice Guidelines. Available at: http://www.nccn.org/professionals/physician_gls/default.asp. Accessed December 2005.

    • Search Google Scholar
    • Export Citation
  • 22.

    American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility. J Clin Oncol 2003;21:23972406.

    • Search Google Scholar
    • Export Citation
  • 23.

    Pate v Threlkel, 661 So.2d 278 (Fla. 1995).

  • 24.

    Safer v Pack, 291 N.J.Super. 619, 677 A.2d 1188 (N.J.Super.App.Div. 1996).

  • 25.

    Rothenberg KH. Breast cancer, the genetic ``quick fix,'' and the Jewish community. Ethical, legal, and social challenges. Health Matrix Clevel 1997;7:97124

    • Search Google Scholar
    • Export Citation
  • 26.

    American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure. ASHG statement: professional disclosure of familial genetic information. Am J Hum Genet 1998;62:474483.

    • Search Google Scholar
    • Export Citation
  • 27.

    Tarasoff v Regents of the University of California, 551, P.2d 334 (Cal. 1976).

  • 28.

    Solomon C, Burt RW. Familial adenomatous polyposis. Available at: http://www.geneclinics.org/servlet/access?db=geneclinics&site=gt&id=8888891&key=4vpwoPBUz29Za&gry=&fcn=y&fw=WCkt&filename=/profiles/fap/index.html. Accessed December 2005.

    • Search Google Scholar
    • Export Citation
  • 29.

    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. Am J Hum Genet 1995;57:12331241.

    • Search Google Scholar
    • Export Citation
  • 30.

    Neslon RM, Botlikn JR, Kodish ED et al.. Ethical issues with genetic testing in pediatrics. Pediatrics 2001;107:14511455

  • 31.

    Wagner TM, Moslinger R, Langbauer G et al.. Attitude towards prophylactic surgery and effects of genetic counselling in families with BRCA mutations. Austrian Hereditary Breast and Ovarian Cancer Group. Br J Cancer 2000;82:124953.

    • Search Google Scholar
    • Export Citation
  • 32.

    Medical Professionalism Project. Medical professionalism in the new millennium: a physician charter. Ann Intern Med 2002;136:243246.

    • Search Google Scholar
    • Export Citation
  • 33.

    Rulyak SJ, Brentnall TA. Inherited pancreatic cancer: improvements in our understanding of genetics and screening. Int J Biochem Cell Biol 2004;36:13861392.

    • Search Google Scholar
    • Export Citation
  • 34.

    Evans JP, Burke W, Chen R et al.. Familial pancreatic adenocarcinoma: association with diabetes and early molecular diagnosis. J Med Genet 1995;32:330335.

    • Search Google Scholar
    • Export Citation
  • 35.

    Lynch HT, Deters CA, Lynch JF, Brand RA. Challenging pancreatic cancer-prone pedigrees: a nosologic dilemma. Am J Gastroenterol 2002;97:30623070.

    • Search Google Scholar
    • Export Citation
  • 36.

    Lubinski J, Phelan CM, Ghadirian P et al.. Cancer variation associated with the position of the mutation in the BRCA2 gene. Fam Cancer 2004;3:110.

    • Search Google Scholar
    • Export Citation
  • 37.

    Lal G, Liu L, Hogg D et al.. Patients with both pancreatic adenocarcinoma and melanoma my harbor germline CDKN2A mutations. Genes Cromosomes Cancer 2000;27:358361.

    • Search Google Scholar
    • Export Citation
  • 38.

    Beauchamp TL, Childress JF. Principles of biomedical ethics. 4th edition. New York: Oxford University Press, 1994.

All Time Past Year Past 30 Days
Abstract Views 0 0 0
Full Text Views 206 67 6
PDF Downloads 142 20 5
EPUB Downloads 0 0 0