Literature DB >> 28223885

Informed Consent Template and Guidelines on the Ethical Practice in Human Genetics and Human Genomic Research; Initiatives of the Universiti Sains Malaysia.

Teguh Haryo Sasongko1, Zamh Zabidi-Hussin2, Nor Hayati Othman3, Hans Van Rostenberghe4.   

Abstract

Malaysia is advancing and nearly on pace with the international scientific community in human genetics and human genomics research. However, this research poses unique challenges. Although Malaysia already regulates medical genetic services, these regulations are insufficient for coping with the ethical issues emerging from recent genomic technologies. The Universiti Sains Malaysia recently created in-house guidelines and an informed consent template for genetic and genomic research. This article presents these guidelines and the informed consent template and discusses the justification and the background of the initiative. We also propose recommendations pertaining to local social studies and regulatory arrangements.

Entities:  

Keywords:  Malaysia; ethical; guidelines; human genetics; human genomic; informed consent

Year:  2015        PMID: 28223885      PMCID: PMC5295757     

Source DB:  PubMed          Journal:  Malays J Med Sci        ISSN: 1394-195X


  5 in total

1.  The Genetic Information Nondiscrimination Act (GINA): public policy and medical practice in the age of personalized medicine.

Authors:  Eric A Feldman
Journal:  J Gen Intern Med       Date:  2012-06       Impact factor: 5.128

2.  Whole-genome sequencing in health care: recommendations of the European Society of Human Genetics.

Authors:  Carla G van El; Martina C Cornel; Pascal Borry; Ros J Hastings; Florence Fellmann; Shirley V Hodgson; Heidi C Howard; Anne Cambon-Thomsen; Bartha M Knoppers; Hanne Meijers-Heijboer; Hans Scheffer; Lisbeth Tranebjaerg; Wybo Dondorp; Guido M W R de Wert
Journal:  Eur J Hum Genet       Date:  2013-06       Impact factor: 4.246

3.  ACMG clinical laboratory standards for next-generation sequencing.

Authors:  Heidi L Rehm; Sherri J Bale; Pinar Bayrak-Toydemir; Jonathan S Berg; Kerry K Brown; Joshua L Deignan; Michael J Friez; Birgit H Funke; Madhuri R Hegde; Elaine Lyon
Journal:  Genet Med       Date:  2013-07-25       Impact factor: 8.822

4.  Research ethics recommendations for whole-genome research: consensus statement.

Authors:  Timothy Caulfield; Amy L McGuire; Mildred Cho; Janet A Buchanan; Michael M Burgess; Ursula Danilczyk; Christina M Diaz; Kelly Fryer-Edwards; Shane K Green; Marc A Hodosh; Eric T Juengst; Jane Kaye; Laurence Kedes; Bartha Maria Knoppers; Trudo Lemmens; Eric M Meslin; Juli Murphy; Robert L Nussbaum; Margaret Otlowski; Daryl Pullman; Peter N Ray; Jeremy Sugarman; Michael Timmons
Journal:  PLoS Biol       Date:  2008-03-25       Impact factor: 8.029

5.  International Charter of principles for sharing bio-specimens and data.

Authors:  Deborah Mascalzoni; Edward S Dove; Yaffa Rubinstein; Hugh J S Dawkins; Anna Kole; Pauline McCormack; Simon Woods; Olaf Riess; Franz Schaefer; Hanns Lochmüller; Bartha M Knoppers; Mats Hansson
Journal:  Eur J Hum Genet       Date:  2014-09-24       Impact factor: 4.246

  5 in total
  2 in total

1.  Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond.

Authors:  Go Yoshizawa; Teguh H Sasongko; Chih-Hsing Ho; Kazuto Kato
Journal:  Front Genet       Date:  2017-07-20       Impact factor: 4.599

2.  Non-Synonymous Single-Nucleotide Polymorphisms and Physical Activity Interactions on Adiposity Parameters in Malaysian Adolescents.

Authors:  Nur Lisa Zaharan; Nor Hanisah Muhamad; Muhammad Yazid Jalaludin; Tin Tin Su; Zahurin Mohamed; M N A Mohamed; Hazreen A Majid
Journal:  Front Endocrinol (Lausanne)       Date:  2018-04-27       Impact factor: 5.555

  2 in total

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