Literature DB >> 22396320

Arrays in postnatal and prenatal diagnosis: An exploration of the ethics of consent.

Wybo Dondorp1, Birgit Sikkema-Raddatz, Christine de Die-Smulders, Guido de Wert.   

Abstract

The introduction of genome-wide arrays in postnatal and prenatal diagnosis raises challenging ethical issues. Here, we explore questions with regard to the ethics of consent. One important issue is whether informed consent for genome-wide array-based testing is in fact feasible, given the wide range of possible outcomes and related options. The proposed alternative of "generic consent" will have to be studied in practice. From an ethical point of view, the question is whether consent would still be sufficiently "informed" in a generic approach. Another issue that has not yet been given much attention is how far parents, or pregnant women and their partners, should be allowed to determine the range of possible outcomes that will or will not be reported back to them. The scope and limits of parents' and prospective parents' right to know or not to know are far from clear. The complex normative issues on the content and weight of these rights can only be answered by taking full account of the rights and interests of all the parties involved: prospective and actual parents, children, and relatives. This paper is the result of a working group meeting preceding the European Society of Human Genetics 2011 Conference, where these issues were addressed.
© 2012 Wiley Periodicals, Inc.

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Year:  2012        PMID: 22396320     DOI: 10.1002/humu.22068

Source DB:  PubMed          Journal:  Hum Mutat        ISSN: 1059-7794            Impact factor:   4.878


  23 in total

1.  Whole-genome sequencing in health care. Recommendations of the European Society of Human Genetics.

Authors:  Carla G van El; Martina C Cornel; Pascal Borry; Ros J Hastings; Florence Fellmann; Shirley V Hodgson; Heidi C Howard; Anne Cambon-Thomsen; Bartha M Knoppers; Hanne Meijers-Heijboer; Hans Scheffer; Lisbeth Tranebjaerg; Wybo Dondorp; Guido M W R de Wert
Journal:  Eur J Hum Genet       Date:  2013-06       Impact factor: 4.246

2.  Microarrays as a diagnostic tool in prenatal screening strategies: ethical reflection.

Authors:  Antina de Jong; Wybo J Dondorp; Merryn V E Macville; Christine E M de Die-Smulders; Jan M M van Lith; Guido M W R de Wert
Journal:  Hum Genet       Date:  2014-02       Impact factor: 4.132

3.  Three clinical experiences with SNP array results consistent with parental incest: a narrative with lessons learned.

Authors:  Benjamin M Helm; Katherine Langley; Brooke Spangler; Samantha Vergano
Journal:  J Genet Couns       Date:  2013-11-13       Impact factor: 2.537

4.  Whole-genome sequencing in health care: recommendations of the European Society of Human Genetics.

Authors:  Carla G van El; Martina C Cornel; Pascal Borry; Ros J Hastings; Florence Fellmann; Shirley V Hodgson; Heidi C Howard; Anne Cambon-Thomsen; Bartha M Knoppers; Hanne Meijers-Heijboer; Hans Scheffer; Lisbeth Tranebjaerg; Wybo Dondorp; Guido M W R de Wert
Journal:  Eur J Hum Genet       Date:  2013-06       Impact factor: 4.246

5.  Comparing genetic counselor's and patient's perceptions of needs in prenatal chromosomal microarray testing.

Authors:  Sarah A Walser; Katherine S Kellom; Steven C Palmer; Barbara A Bernhardt
Journal:  Prenat Diagn       Date:  2015-06-19       Impact factor: 3.050

6.  Advantages of expanded universal carrier screening: what is at stake?

Authors:  Sanne van der Hout; Kim Ca Holtkamp; Lidewij Henneman; Guido de Wert; Wybo J Dondorp
Journal:  Eur J Hum Genet       Date:  2016-09-28       Impact factor: 4.246

7.  'We Should View Him as an Individual': The Role of the Child's Future Autonomy in Shared Decision-Making About Unsolicited Findings in Pediatric Exome Sequencing.

Authors:  W Dondorp; I Bolt; A Tibben; G De Wert; M Van Summeren
Journal:  Health Care Anal       Date:  2021-01-02

8.  Exploring the Issues Surrounding Clinical Exome Sequencing in the Prenatal Setting.

Authors:  Swetha Narayanan; Bruce Blumberg; Marla L Clayman; Vivian Pan; Catherine Wicklund
Journal:  J Genet Couns       Date:  2018-03-10       Impact factor: 2.537

9.  Rapid Challenges: Ethics and Genomic Neonatal Intensive Care.

Authors:  Christopher Gyngell; Ainsley J Newson; Dominic Wilkinson; Zornitza Stark; Julian Savulescu
Journal:  Pediatrics       Date:  2019-01       Impact factor: 7.124

10.  Whole-exome sequencing in pediatrics: parents' considerations toward return of unsolicited findings for their child.

Authors:  Candice Cornelis; Aad Tibben; Wybo Dondorp; Mieke van Haelst; Annelien L Bredenoord; Nine Knoers; Marcus Düwell; Ineke Bolt; Marieke van Summeren
Journal:  Eur J Hum Genet       Date:  2016-07-27       Impact factor: 4.246

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