Literature DB >> 8988163

Ethical issues in genetic research: disclosure and informed consent.

P R Reilly1, M F Boshar, S H Holtzman.   

Abstract

As research to correlate genetic status with predisposition to disease has accelerated, so has the concern that participation in such studies creates the risk of genetic discrimination and emotional distress. There is a need to broaden disclosure during the consent process to ensure that potential subjects understand these risks and other issues and to address them in the consent form. We describe the broad approach that we have taken in regard to disclosure and consent in gene mapping studies.

Keywords:  Biomedical and Behavioral Research; Genetics and Reproduction; Human Genome Project; Office for Protection from Research Risks

Mesh:

Year:  1997        PMID: 8988163     DOI: 10.1038/ng0197-16

Source DB:  PubMed          Journal:  Nat Genet        ISSN: 1061-4036            Impact factor:   38.330


  21 in total

1.  Enhancing the ethical conduct of genetic research: investigating views of parents on including their healthy children in a study on mild hearing loss.

Authors:  L Gillam; Z Poulakis; S Tobin; M Wake
Journal:  J Med Ethics       Date:  2006-09       Impact factor: 2.903

2.  Discovery and disclosure of incidental findings in neuroimaging research.

Authors:  Judy Illes; Matthew P Kirschen; Kim Karetsky; Megan Kelly; Arnold Saha; John E Desmond; Thomas A Raffin; Gary H Glover; Scott W Atlas
Journal:  J Magn Reson Imaging       Date:  2004-11       Impact factor: 4.813

Review 3.  Informed consent in genomics and genetic research.

Authors:  Amy L McGuire; Laura M Beskow
Journal:  Annu Rev Genomics Hum Genet       Date:  2010       Impact factor: 8.929

4.  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 5.  Getting personal: Head and neck cancer management in the era of genomic medicine.

Authors:  Andrew C Birkeland; Wendy R Uhlmann; J Chad Brenner; Andrew G Shuman
Journal:  Head Neck       Date:  2015-08-13       Impact factor: 3.147

6.  Voluntary participation and informed consent to international genetic research.

Authors:  Patricia A Marshall; Clement A Adebamowo; Adebowale A Adeyemo; Temidayo O Ogundiran; Mirjana Vekich; Teri Strenski; Jie Zhou; T Elaine Prewitt; Richard S Cooper; Charles N Rotimi
Journal:  Am J Public Health       Date:  2006-10-03       Impact factor: 9.308

7.  Still Human: A Call for Increased Focus on Ethical Standards in Cadaver Research.

Authors:  Michelle C Bach
Journal:  HEC Forum       Date:  2016-12

8.  Impact of Genetic Counseling and Testing on Altruistic Motivations to Test for BRCA1/2: a Longitudinal Study.

Authors:  Rahul Garg; Joseph Vogelgesang; Kimberly Kelly
Journal:  J Genet Couns       Date:  2015-11-18       Impact factor: 2.537

9.  Biobanking, consent, and commercialization in international genetics research: the Type 1 Diabetes Genetics Consortium.

Authors:  Mark A Hall; Nancy M P King; Letitia H Perdue; Joan E Hilner; Beena Akolkar; Carla J Greenbaum; Catherine McKeon
Journal:  Clin Trials       Date:  2010       Impact factor: 2.486

10.  Disclosure of genetics research results after the death of the patient participant: a qualitative study of the impact on relatives.

Authors:  E Ormondroyd; C Moynihan; M Watson; C Foster; S Davolls; A Ardern-Jones; R Eeles
Journal:  J Genet Couns       Date:  2007-05-11       Impact factor: 2.537

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.