search

menu

  • Research Research
    • Where science meets inspired minds

    • Back
    • Research
    • Our Science
    • Research Groups
    • Facilities & Platforms
    • Clinical research
    • Find a researcher
    • Publications
    • Knowledge Transfer
  • Careers & study Careers & study
    • Become a leader in cancer research

    • Back
    • Careers & study
    • Vacancies
    • Faculty
    • Scientific staff
    • Scientific support staff
    • Postdoctoral fellows
    • PhD Students
    • Operational staff
    • Clinical fellows
    • Life in Amsterdam
    • Student internships
  • News & Events News & Events
    • Check out our stories and events

    • Back
    • News & Events
    • News
    • Media & Press
    • Calendar
  • About us About us
    • Maximum impact for cancer patients

    • Back
    • About us
    • Our vision
    • Organization
    • Collaborations
    • Responsible Research
    • Support us
    • Visit us
    • Contact us
  • Support us
Support us
  • Home
  • Publications
  • Research
  • Publications
  • Article

Am I My Family's Keeper? Disclosure Dilemmas in Next-Generation Sequencing.

Roel H P Wouters ,
Rhodé M Bijlsma ,
Margreet G E M Ausems ,
Johannes J M van Delden ,
Emile E Voest ,
Annelien L Bredenoord

Abstract

Ever since genetic testing is possible for specific mutations, ethical debate has sparked on the question of whether professionals have a duty to warn not only patients but also their relatives that might be at risk for hereditary diseases. As next-generation sequencing (NGS) swiftly finds its way into clinical practice, the question who is responsible for conveying unsolicited findings to family members becomes increasingly urgent. Traditionally, there is a strong emphasis on the duties of the professional in this debate. But what is the role of the patient and her family? In this article, we discuss the question of whose duty it is to convey relevant genetic risk information concerning hereditary diseases that can be cured or prevented to the relatives of patients undergoing NGS. We argue in favor of a shared responsibility for professionals and patients and present a strategy that reconciles these roles: a moral accountability nudge. Incorporated into informed consent and counseling services such as letters and online tools, this nudge aims to create awareness on specific patient responsibilities. Commitment of all parties is needed to ensure adequate dissemination of results in the NGS era.

More about this publication

Human mutation

Volume 37
Issue nr. 12
Pages 1257-1262
Publication date 01-12-2016

Full text links

Publisher website (DOI) 10.1002/humu.23118
Europe PubMed Central 27647774
Pubmed 27647774

Where science meets inspired minds

Contact

Plesmanlaan 121
1066CX Amsterdam

020 512 9111 communicatie@nki.nl

Quick links

  • Vacancies
  • News
  • Contact us
  • Media & Press

Follow us on

Disclaimer
Privacy statement
Cookies
Change cookie settings

This site uses cookies

This website uses cookies to ensure you get the best experience on our website.