Literature DB >> 20680423

Biobanks: importance, implications and opportunities for genetic counselors.

Alice K Hawkins1.   

Abstract

Biobanks are collections of human biological tissue specimens and related health data. Biobank research hopes to provide novel insights into the genetic component of disease, ultimately leading to a more personalized approach to healthcare. However, biobanks have sparked debate due to the ethical, legal, and social implications surrounding utilization of population samples and data. These controversies include issues of consent, privacy and confidentiality, return of results and data-sharing. This paper provides an overview of the different types and scope of biobanks and an examination of the most pertinent ethical, legal and social considerations surrounding such research, as well as how some of these concerns are being addressed. The paper finishes with a discussion of the relevance of biobanks to the genetic counseling field and concludes that genetic counselors are in a position to make a unique, educated and practical contribution to the ongoing dialogue and direction of biobank research.

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Year:  2010        PMID: 20680423     DOI: 10.1007/s10897-010-9305-1

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  40 in total

1.  Genebanks: a comparison of eight proposed international genetic databases.

Authors:  Melissa A Austin; Sarah Harding; Courtney McElroy
Journal:  Community Genet       Date:  2003

2.  Structuring public engagement for effective input in policy development on human tissue biobanking.

Authors:  Kieran C O'Doherty; A Hawkins
Journal:  Public Health Genomics       Date:  2010-04-15       Impact factor: 2.000

Review 3.  The social and ethical issues of post-genomic human biobanks.

Authors:  Anne Cambon-Thomsen
Journal:  Nat Rev Genet       Date:  2004-11       Impact factor: 53.242

4.  Community engagement and informed consent in the International HapMap project.

Authors:  Charles Rotimi; Mark Leppert; Ichiro Matsuda; Changqing Zeng; Houcan Zhang; Clement Adebamowo; Ike Ajayi; Toyin Aniagwu; Missy Dixon; Yoshimitsu Fukushima; Darryl Macer; Patricia Marshall; Chibuzor Nkwodimmah; Andy Peiffer; Charmaine Royal; Eiko Suda; Hui Zhao; Vivian Ota Wang; Jean McEwen
Journal:  Community Genet       Date:  2007

5.  Informed consent in a changing environment.

Authors:  Mary Boulton; Michael Parker
Journal:  Soc Sci Med       Date:  2007-09-25       Impact factor: 4.634

6.  Biobanking for epidemiological research and public health.

Authors:  Angela M Brand; Nicole M Probst-Hensch
Journal:  Pathobiology       Date:  2007       Impact factor: 4.342

Review 7.  From genetic privacy to open consent.

Authors:  Jeantine E Lunshof; Ruth Chadwick; Daniel B Vorhaus; George M Church
Journal:  Nat Rev Genet       Date:  2008-05       Impact factor: 53.242

8.  The emergence of an ethical duty to disclose genetic research results: international perspectives.

Authors:  Bartha Maria Knoppers; Yann Joly; Jacques Simard; Francine Durocher
Journal:  Eur J Hum Genet       Date:  2006-07-26       Impact factor: 4.246

9.  Trends in ethical and legal frameworks for the use of human biobanks.

Authors:  A Cambon-Thomsen; E Rial-Sebbag; B M Knoppers
Journal:  Eur Respir J       Date:  2007-08       Impact factor: 16.671

Review 10.  Translating pharmacogenomics: challenges on the road to the clinic.

Authors:  Jesse J Swen; Tom W Huizinga; Hans Gelderblom; Elisabeth G E de Vries; Willem J J Assendelft; Julia Kirchheiner; Henk-Jan Guchelaar
Journal:  PLoS Med       Date:  2007-08       Impact factor: 11.069

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  21 in total

1.  Sustainability in Biobanking.

Authors:  Maram Abdaljaleel; Elyse J Singer; William H Yong
Journal:  Methods Mol Biol       Date:  2019

2.  The sense of responsibility in the context of professional activities in Medical Genetics.

Authors:  Natália Oliva-Teles
Journal:  Med Health Care Philos       Date:  2011-11

Review 3.  Using electronic health records to drive discovery in disease genomics.

Authors:  Isaac S Kohane
Journal:  Nat Rev Genet       Date:  2011-05-18       Impact factor: 53.242

4.  Ethical considerations in biobanks: how a public health ethics perspective sheds new light on old controversies.

Authors:  Alice Hawkins Virani; Holly Longstaff
Journal:  J Genet Couns       Date:  2014-10-29       Impact factor: 2.537

5.  Returning Results: Let's Be Honest!

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

6.  A closer look at the recommended criteria for disclosing genetic results: perspectives of medical genetic specialists, genomic researchers, and institutional review board chairs.

Authors:  Debra S Brandt; Laura Shinkunas; Stephen L Hillis; Sandra E Daack-Hirsch; Martha Driessnack; Nancy R Downing; Megan F Liu; Lisa L Shah; Janet K Williams; Christian M Simon
Journal:  J Genet Couns       Date:  2013-04-02       Impact factor: 2.537

Review 7.  The Genetic Counselor's Role in Managing Ethical Dilemmas Arising in the Laboratory Setting.

Authors:  Jessica R Balcom; Katrina E Kotzer; Lindsey A Waltman; Jennifer L Kemppainen; Brittany C Thomas
Journal:  J Genet Couns       Date:  2016-04-22       Impact factor: 2.537

8.  Formative research on perceptions of biobanking: what community members think.

Authors:  John S Luque; Gwendolyn P Quinn; Francisco A Montel-Ishino; Mariana Arevalo; Shalanda A Bynum; Shalewa Noel-Thomas; Kristen J Wells; Clement K Gwede; Cathy D Meade
Journal:  J Cancer Educ       Date:  2012-03       Impact factor: 2.037

9.  Biobanking: The Melding of Research with Clinical Care.

Authors:  Maureen E Smith; Sharon Aufox
Journal:  Curr Genet Med Rep       Date:  2013-06

10.  Perceptions of tissue storage in a dementia population among spouses and offspring.

Authors:  Megan M Martin; Erin W Rothwell; Vickie L Venne; Norman L Foster
Journal:  J Genet Couns       Date:  2015-02-03       Impact factor: 2.537

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