Evidence map›Paper›PMID 28303452›Full record

ArticleJournal of genetic counseling2017

Should Genetic Testing be Offered for Children? The Perspectives of Adolescents and Emerging Adults in Families with Li-Fraumeni Syndrome.

Melissa A Alderfer, Robert B Lindell, Claire I Viadro, Kristin Zelley, Jessica Valdez, Belinda Mandrell, Carol A Ford, Kim E Nichols

Abstract read
PubMed Publisher
In one paragraph

Article in Journal of genetic counseling, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
12citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

12 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Article
  4. Article
  5. Factors impacting adolescent and young adult cancer patients' decision to pursue genetic counseling and testing.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022
    Article
  6. Article
  7. Article
  8. Article
  9. Review
  10. Article
  11. [A rhabdomyosarcoma patient from a Li-Fraumeni syndrome family: a case report and literature review].Zhongguo dang dai er ke za zhi = Chinese journal of contemporary pediatrics · 2017
    Review
  12. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Melissa A AlderferDivision of Oncology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA. melissa.alderfer@nemours.org.
Robert B LindellDepartment of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Claire I ViadroConsultant, Chapel Hill, NC, USA.
Kristin ZelleyDivision of Oncology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Jessica ValdezDivision of Cancer Predisposition, St. Jude Children's Research Hospital, Memphis, TN, USA.
Belinda MandrellDivision of Nursing Research, St. Jude Children's Research Hospital, Memphis, TN, USA.
Carol A FordDepartment of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Kim E NicholsDivision of Oncology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Whether children should be offered genetic testing for cancer risk is much debated but young voices are rarely heard in these conversations. The current study explored perspectives of genetic testing held by adolescents and emerging adults in families with Li Fraumeni syndrome (LFS). Twelve 12- to 25-year-olds in families with LFS completed qualitative interviews for this study. All believed that testing should be offered for children but many qualified this statement saying parental approval would be needed and testing should be optional. Genetic testing was seen as way to learn of risk status, allow for disease prevention efforts, and reduce uncertainty and anxiety. Perceived disadvantages included negative emotions associated with the testing result. Participants generally felt that children should be involved in the testing decision, but that parents could unilaterally decide to have a child tested in certain circumstances (e.g., young age, high risk). All who were aware of having been tested and of their test result (n = 7; 4 positive) said testing had no negative impact on their outlook and they agreed with the decision to undergo testing. Implications of these findings for clinical practice and future research are discussed.

Indexed as

Genetic Predisposition to DiseaseGenetic TestingAdolescentAdultChildFemaleGerm-Line MutationHumansLi-Fraumeni SyndromeMaleParent-Child RelationsYoung AdultCancer predispositionChildren/adolescentsGenetic testingLi-Fraumeni syndromePsychosocial impactTP53 gene

Identifiers

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.