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Working with Human Tissues for Translational Cancer Research
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The Right to Know and the Right Not to Know Revisited: Part One.

Roger Brownsword1,2, Jeff Wale2

  • 1King's College London, London, UK.

Asian Bioethics Review
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PubMed
Summary

Individuals have a right to know or not know genetic information. This paper examines this bioethical issue using UK Biobank and non-invasive prenatal testing cases.

Keywords:
Genetic informationNon-invasive prenatal testingRight not to knowRight to knowUK Biobank

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Area of Science:

  • Bioethics
  • Human Genetics
  • Genomic Medicine

Background:

  • Advances in human genetics raise ethical questions about individuals' rights to access or withhold genetic information.
  • Genetic data is increasingly generated through large-scale biobanks and prenatal testing, necessitating a re-evaluation of these rights.

Purpose of the Study:

  • To analyze the ethical and legal dimensions of the 'right to know' versus the 'right not to know' genetic information.
  • To explore these rights within the contexts of UK Biobank participants and non-invasive prenatal testing (NIPT).

Main Methods:

  • Review of legal jurisprudence in the UK and Singapore concerning genetic information rights.
  • Ethical analysis of grounding and limiting principles for the claimed rights.
  • Case study examination of UK Biobank exome sequencing and NIPT.

Main Results:

  • The study identifies complex ethical considerations surrounding genetic data ownership and disclosure.
  • Legal precedents offer some guidance, but ethical grounding for individual rights requires further debate.
  • The limits of these rights in practice, particularly concerning third-party interests, are explored.

Conclusions:

  • The increasing accessibility of genetic information necessitates a robust societal debate on individual rights.
  • Balancing the right to know and not to know is crucial for fostering a genetically aware society.
  • Opportunities remain to shape policy and ethical frameworks governing genetic information.