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1. A Duty to Recontact in the Context of Genetics: Futuristic or Realistic?

Author

Ploem, Corrette, Mitchell, Colin, van Harten, Wim, and Gevers, Sjef

Subjects
*PATIENTS' rights, *DUTY, *GENETICS, *GENETIC testing, *FREEDOM of information
Abstract

Medical genetic testing, 'next generation sequencing', is increasingly generating data that could become useful for patients after they have been discharged from care. If new information is discovered that links a disease to a specific mutation, do health professionals have a legal duty to recontact their patients? Apart from other concerns (such as respecting the patient's right not to know), in many cases, this would require re-evaluation or re-analysis of the data. Taking such issues into account, we conclude that, at least at this point in time, it is not arguable that there is an unconditional duty of this kind. Health professionals should always do what can be reasonably expected from them to do justice to the patient's right to information. When there is reason to believe that recontacting would be of significant clinical relevance for the patient, they should do so, unless efforts and costs involved would be disproportional. [ABSTRACT FROM AUTHOR]

Published
2018
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2. A duty to recontact in the context of genetics: futuristic or realistic?

Author

Corrette Ploem, Wim H. van Harten, Colin Mitchell, Sjef Gevers, Health Technology & Services Research, Public and occupational health, APH - Personalized Medicine, APH - Quality of Care, ANS - Cellular & Molecular Mechanisms, ANS - Complex Trait Genetics, and APH - Digital Health

Subjects
0301 basic medicine, Legal duty, medicine.diagnostic_test, Health professionals, Specific mutation, business.industry, Health Policy, media_common.quotation_subject, patient's right to information, Internet privacy, Context (language use), genetic testing, 03 medical and health sciences, 030104 developmental biology, updating previous test results, medicine, Health law, duty to recontact, Justice (ethics), Psychology, business, Law, Duty, Genetic testing, media_common
Abstract

Medical genetic testing, ‘next generation sequencing’, is increasingly generating data that could become useful for patients after they have been discharged from care. If new information is discovered that links a disease to a specific mutation, do health professionals have a legal duty to recontact their patients? Apart from other concerns (such as respecting the patient’s right not to know), in many cases, this would require re-evaluation or re-analysis of the data. Taking such issues into account, we conclude that, at least at this point in time, it is not arguable that there is an unconditional duty of this kind. Health professionals should always do what can be reasonably expected from them to do justice to the patient’s right to information. When there is reason to believe that recontacting would be of significant clinical relevance for the patient, they should do so, unless efforts and costs involved would be disproportional.

Published
2018

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