(Q34238585)

31 July 2017

title

Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases (English)

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31 July 2017

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2

Bartha Maria Knoppers

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Shelin Adam

object named as

Shelin Adam

7

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Denise Avard

9

object named as

Denise Avard

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31 July 2017

4

Kym M Boycott

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31 July 2017

1

Erika Kleiderman

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31 July 2017

3

Conrad V Fernandez

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31 July 2017

Gail Ouellette

5

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31 July 2017

Durhane Wong-Rieger

6

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31 July 2017

Julie Richer

8

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31 July 2017

language of work or name

English

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publication date

19 December 2013

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Journal of Medical Ethics

31 July 2017

published in

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31 July 2017

volume

40

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31 July 2017

issue

10

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31 July 2017

page(s)

691-696

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Return of whole-genome sequencing results in paediatric research: a statement of the P3G international paediatrics platform

31 July 2017

cites work

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Recommendations for returning genomic incidental findings? We need to talk!

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Growing up in the genomic era: implications of whole-genome sequencing for children, families, and pediatric practice

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Incidental findings from clinical genome-wide sequencing: a review

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

The disclosure of incidental genomic findings: an "ethically important moment" in pediatric research and practice

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Disclosure of incidental findings from next-generation sequencing in pediatric genomic research

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Parents' attitudes toward pediatric genetic testing for common disease risk

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Parents' and children's communication about genetic risk: a qualitative study, learning from families' experiences

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

The return of individual research findings in paediatric genetic research

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Rare diseases - avoiding misperceptions and establishing realities: the need for reliable epidemiological data

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

The parental investment factor and the child's right to an open future.

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Family communication between children and their parents about inherited genetic conditions: a meta-synthesis of the research

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Combining individual interviews and focus groups to enhance data richness

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Uncertainty and perceived personal control among parents of children with rare chromosome conditions: the role of genetic counseling

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

The return of research results to participants: pilot questionnaire of adolescents and parents of children with cancer

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Toward a biopsychosocial model for 21st-century genetics

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

GIG response to the UK Clinical Genetics Society report "The genetic testing of children"

6 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Using next-generation sequencing for the diagnosis of rare disorders: a family with retinitis pigmentosa and skeletal abnormalities.

6 July 2018

1 reference

https://api.crossref.org/works/10.1136%2FMEDETHICS-2013-101648

Informed consent for whole genome sequencing: a qualitative analysis of participant expectations and perceptions of risks, benefits, and harms.

21 January 2018

1 reference

https://api.crossref.org/works/10.1136%2FMEDETHICS-2013-101648

Communication of results and disclosure of incidental findings in longitudinal paediatric research

21 January 2018

1 reference

https://api.crossref.org/works/10.1136%2FMEDETHICS-2013-101648

Stress and well-being among parents of children with rare diseases: a prospective intervention study.

21 January 2018

1 reference

https://api.crossref.org/works/10.1136%2FMEDETHICS-2013-101648

Meeting summary: Ethical aspects of whole exome and whole genome sequencing studies (WES/WGS) in rare diseases, Tel Aviv, Israel, January 2013.

21 January 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Incidental findings in clinical genomics: a clarification

28 October 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Engaging children in genomics research: decoding the meaning of assent in research

28 October 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

Minors and informed consent in carrier testing: a survey of European clinical geneticists

28 October 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4173986

“I want to know what's in Pandora's box”: Comparing stakeholder perspectives on incidental findings in clinical whole genomic sequencing

28 October 2018

1 reference

https://api.crossref.org/works/10.1136%2FMEDETHICS-2013-101648

Health first, genetics second: exploring families' experiences of communicating genetic information

21 January 2018

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/24356209

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

There is nothing 'incidental' about unrelated findings

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/24356209

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Identifiers

DOI

10.1136/MEDETHICS-2013-101648

1 reference

release_5epdfbs7jfecxhqxprmv25pxs4

31 July 2017

Fatcat ID

1 reference

Fatcat

https://api.fatcat.wiki/v0/release/5epdfbs7jfecxhqxprmv25pxs4

mapped directly with Wikidata item

24 November 2022

based on heuristic

PMC publication ID

4173986

1 reference

31 July 2017

1 reference