Literature DB >> 19764035

Genetic research on stored tissue samples from minors: a systematic review of the ethical literature.

Kristien Hens1, Herman Nys, Jean-Jacques Cassiman, Kris Dierickx.   

Abstract

The potential benefits of biobank research are well known. Also, the ethical implications of genetic research on stored tissue samples are well discussed in existing literature. The inclusion of tissue samples from minors may have significant scientific value. However, this inclusion raises specific ethical questions. We have performed a systematic search of the literature and found 21 theoretical and empirical articles dealing with the issue. After review, we distilled five clusters of themes: consent, risks, benefits, return of results, and ownership. We have described the different components of these themes, as they occurred in the literature and have provided a discourse on the topic.

Mesh：

Year:  2009        PMID： 19764035     DOI： 10.1002/ajmg.a.33032

Source DB:  PubMed          Journal:  Am J Med Genet A        ISSN： 1552-4825            Impact factor:   2.802


  16 in total

1.  Regulating biobanking with children's tissue: a legal analysis and the experts' view.

Authors:  Elcke J Kranendonk; M Corrette Ploem; Raoul C M Hennekam
Journal:  Eur J Hum Genet       Date:  2015-04-15       Impact factor: 4.246

2.  Returning Results: Let's Be Honest!

Authors:  Bernice S Elger; Eva De Clercq
Journal:  Genet Test Mol Biomarkers       Date:  2017-02-24

3.  The 'thousand-dollar genome': an ethical exploration.

Authors:  Wybo J Dondorp; Guido M W R de Wert
Journal:  Eur J Hum Genet       Date:  2013-06       Impact factor: 4.246

Review 4.  Children and biobanks: a review of the ethical and legal discussion.

Authors:  Kristien Hens; Emmanuelle Lévesque; Kris Dierickx
Journal:  Hum Genet       Date:  2011-06-10       Impact factor: 4.132

5.  Children, biobanks and the scope of parental consent.

Authors:  Kristien Hens; Jean-Jacques Cassiman; Herman Nys; Kris Dierickx
Journal:  Eur J Hum Genet       Date:  2011-03-09       Impact factor: 4.246

6.  Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment.

Authors:  Holly K Tabor; Tracy Brazg; Julia Crouch; Emily E Namey; Stephanie M Fullerton; Laura M Beskow; Benjamin S Wilfond
Journal:  J Empir Res Hum Res Ethics       Date:  2011-12       Impact factor: 1.742

7.  Inclusion of pediatric samples in an opt-out biorepository linking DNA to de-identified medical records: pediatric BioVU.

Authors:  T L McGregor; S L Van Driest; K B Brothers; E A Bowton; L J Muglia; D M Roden
Journal:  Clin Pharmacol Ther       Date:  2012-11-21       Impact factor: 6.875

8.  Why parents consent to their children's participation in genetic research: A study of parental decision making.

Authors:  Sunita Kumari; Triptish Bhatia; Nagendra N Mishra; Nupur Kumari; Sreelatha S Narayanan; Deepak Malik; Smita N Deshpande
Journal:  Indian J Med Ethics       Date:  2019 Oct-Dec

9.  Attitudes of African-American parents about biobank participation and return of results for themselves and their children.

Authors:  Colin M E Halverson; Lainie Friedman Ross
Journal:  J Med Ethics       Date:  2012-05-09       Impact factor: 2.903

10.  "That's a good question": university researchers' views on ownership and retention of human genetic specimens.

Authors:  R Jean Cadigan; Michele M Easter; Allison W Dobson; Arlene M Davis; Barbra B Rothschild; Catherine Zimmer; Rene Sterling; Gail Henderson
Journal:  Genet Med       Date:  2011-06       Impact factor: 8.822
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