Literature DB >> 19609725

Genetic testing of children for familial cancers: a comparative legal perspective on consent, communication of information and confidentiality.

Roy Gilbar1.   

Abstract

Genetic testing of children is the subject of ethical and legal debate. On the one hand, the literature emphasises the personal interests and rights of the individual child. On the other, the interests of the parents and the family as a whole are discussed. English law relies by and large on a patient-centred approach where the child has some say about his/her medical care. The view reflected in Anglo-American guidelines, more specifically, is that testing is potentially harmful and may compromise the child's autonomy and confidentiality. This explains the reluctance to submit children to predictive genetic testing. An analysis of Israeli law, however, reflects a different approach, where the benefit to the child is defined more widely. This accords with the general communitarian position adopted by Israeli law, a legal position that reflects the duality of Israeli society in simultaneously promoting both fundamental human rights and family ethics. In practice, however, there may be little difference, as children in both jurisdictions have access to similar genetic services.

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Year:  2009        PMID: 19609725     DOI: 10.1007/s10689-009-9268-2

Source DB:  PubMed          Journal:  Fam Cancer        ISSN: 1389-9600            Impact factor:   2.375


  39 in total

1.  Abortion and neonaticide: ethics, practice, and policy in four nations.

Authors:  Michael L Gross
Journal:  Bioethics       Date:  2002-06       Impact factor: 1.898

2.  Predictive genetic testing in young people for adult-onset conditions: where is the empirical evidence?

Authors:  R E Duncan; M B Delatycki
Journal:  Clin Genet       Date:  2006-01       Impact factor: 4.438

3.  On new reproductive technologies and family ethics: pre-implantation genetic diagnosis for sibling donor in Israel and Germany.

Authors:  Yael Hashiloni-Dolev; Shiri Shkedi
Journal:  Soc Sci Med       Date:  2007-07-31       Impact factor: 4.634

4.  The quest for the perfect baby: why do Israeli women seek prenatal genetic testing?

Authors:  Larissa Remennick
Journal:  Sociol Health Illn       Date:  2006-01

5.  The genetic testing of children. Working Party of the Clinical Genetics Society (UK)

Authors:  A Clarke
Journal:  J Med Genet       Date:  1994-10       Impact factor: 6.318

6.  Wrestling with the future: should we test children for adult-onset genetic conditions?

Authors:  Cynthia B Cohen
Journal:  Kennedy Inst Ethics J       Date:  1998-06

7.  Patient autonomy and relatives' right to know genetic information.

Authors:  Roy Gilbar
Journal:  Med Law       Date:  2007-12

8.  "Family matters": a conceptual framework for genetic testing in children.

Authors:  Allyn McConkie-Rosell; Gail A Spiridigliozzi
Journal:  J Genet Couns       Date:  2004-02       Impact factor: 2.537

9.  Predictive genetic testing of children for adult-onset diseases and psychological harm.

Authors:  P J Malpas
Journal:  J Med Ethics       Date:  2008-04       Impact factor: 2.903

10.  Parents' responses to predictive genetic testing in their children: report of a single case study.

Authors:  S Michie; V McDonald; M Bobrow; C McKeown; T Marteau
Journal:  J Med Genet       Date:  1996-04       Impact factor: 6.318

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  3 in total

1.  "Both Sides of the Wheelchair": The Views of Individuals with, and Parents of Individuals with Friedreich Ataxia Regarding Pre-symptomatic Testing of Minors.

Authors:  Georgia C Lowe; Louise A Corben; Rony E Duncan; Grace Yoon; Martin B Delatycki
Journal:  J Genet Couns       Date:  2015-01-17       Impact factor: 2.537

2.  Rethinking the "open future" argument against predictive genetic testing of children.

Authors:  Jeremy R Garrett; John D Lantos; Leslie G Biesecker; Janet E Childerhose; Wendy K Chung; Ingrid A Holm; Barbara A Koenig; Jean E McEwen; Benjamin S Wilfond; Kyle Brothers
Journal:  Genet Med       Date:  2019-03-21       Impact factor: 8.822

3.  Newborn Screening for the Detection of the TP53 R337H Variant and Surveillance for Early Diagnosis of Pediatric Adrenocortical Tumors: Lessons Learned and Way Forward.

Authors:  Karina C F Tosin; Edith F Legal; Mara A D Pianovski; Humberto C Ibañez; Gislaine Custódio; Denise S Carvalho; Mirna M O Figueiredo; Anselmo Hoffmann Filho; Carmem M C M Fiori; Ana Luiza M Rodrigues; Rosiane G Mello; Karin R P Ogradowski; Ivy Z S Parise; Tatiana E J Costa; Viviane S Melanda; Flora M Watanabe; Denise B Silva; Heloisa Komechen; Henrique A Laureano; Edna K Carboni; Ana P Kuczynski; Gabriela C F Luiz; Leniza Lima; Tiago Tormen; Viviane K Q Gerber; Tania H Anegawa; Sylvio G A Avilla; Renata B Tenório; Elaine L Mendes; Rayssa D Fachin Donin; Josiane Souza; Vanessa N Kozak; Gisele S Oliveira; Deivid C Souza; Israel Gomy; Vinicius B Teixeira; Helena H L Borba; Nilton Kiesel Filho; Guilherme A Parise; Raul C Ribeiro; Bonald C Figueiredo
Journal:  Cancers (Basel)       Date:  2021-12-03       Impact factor: 6.639

  3 in total

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