Ethical and professional challenges posed by patients with genetic concerns: a report of focus group discussions with genetic counselors, physicians, and nurses

J Genet Couns. 2001 Apr;10(2):97-119. doi: 10.1023/a:1009487513618.

Abstract

Ninety-seven physicians, nurses, and genetic counselors from four regions within the United States participated in focus groups to identify the types of ethical and professional challenges that arise when their patients have genetic concerns. Responses were taped and transcribed and then analyzed using the Hill et al. (1997, Counsel Psychol 25:517-522) Consensual Qualitative Research method of analysis. Sixteen major ethical and professional domains and 63 subcategories were identified. Major domains are informed consent; withholding information; facing uncertainty; resource allocation; value conflicts, directiveness/nondirectiveness; determining the primary patient; professional identity issues; emotional responses; diversity issues; confidentiality; attaining/maintaining proficiency; professional misconduct; discrimination; colleague error; and documentation. Implications for practitioners who deal with genetic issues and recommendations for additional research are given.

Publication types

  • Comparative Study

MeSH terms

  • Attitude of Health Personnel
  • Confidentiality
  • Counseling
  • Cultural Diversity
  • Disclosure
  • Dissent and Disputes
  • Emotions
  • Ethics, Professional*
  • Focus Groups
  • Genetic Counseling*
  • Health Care Rationing
  • Humans
  • Informed Consent
  • Interprofessional Relations
  • Nurses
  • Physicians
  • Prenatal Diagnosis
  • Primary Health Care
  • Professional Competence
  • Professional Misconduct
  • Professional-Patient Relations
  • Social Values
  • Uncertainty
  • United States