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Ethical issues in neurogenetics.

Wendy R Uhlmann1, J Scott Roberts2

  • 1Departments of Internal Medicine and Human Genetics, University of Michigan Medical School, Ann Arbor, MI, United States; Center for Bioethics and Social Sciences in Medicine, University of Michigan Medical School, Ann Arbor, MI, United States.

Handbook of Clinical Neurology
|January 13, 2018
PubMed
Summary
This summary is machine-generated.

Genetic testing for inherited neurogenetic conditions presents ethical dilemmas for families. Balancing patient autonomy with potential risks to relatives is crucial for informed decision-making and ethical care.

Keywords:
autonomycognitive impairmentdecisional capacitydirect-to-consumer (DTC)ethical issuesgenetic testingincidental findingsneurogenetic conditionspredictive testingsecondary findingstesting children

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Area of Science:

  • Neurogenetics
  • Medical Ethics
  • Genomic Medicine

Background:

  • Inherited neurogenetic conditions necessitate careful consideration of familial implications.
  • Predictive genetic testing offers risk assessment for asymptomatic relatives.
  • Ethical principles like autonomy, beneficence, and nonmaleficence guide genetic testing decisions.

Purpose of the Study:

  • To explore the ethical issues surrounding genetic testing for neurogenetic conditions.
  • To discuss challenges in disclosure and prioritizing autonomy among relatives.
  • To address ethical considerations in specific populations and emerging genetic testing technologies.

Main Methods:

  • Review of ethical principles and professional guidelines.
  • Analysis of disclosure concerns and autonomy conflicts.
  • Discussion of ethical challenges in diverse clinical scenarios and new technologies.

Main Results:

  • Genetic testing decisions impact relatives, raising ethical concerns.
  • Balancing autonomy, beneficence, and nonmaleficence is complex.
  • Ethical issues are amplified in vulnerable populations and with new testing modalities.

Conclusions:

  • Genetic testing for neurogenetic conditions requires careful ethical navigation.
  • Informed consent and decisional capacity are critical, especially in impaired individuals.
  • Emerging issues like DTC testing and secondary findings demand ongoing ethical scrutiny.