Ethical and legal implications of whole genome and whole exome sequencing in African populations

The disclosure of diagnosis codes can breach research participants' privacy

(2014) Grigorios Loukides et al.   JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION

Identifying Personal Genomes by Surname Inference

(2013) M. Gymrek et al.   SCIENCE

Deleterious- and Disease-Allele Prevalence in Healthy Individuals: Insights from Current Predictions, Mutation Databases, and Population-Scale Resequencing

(2012) Yali Xue et al.   AMERICAN JOURNAL OF HUMAN GENETICS

Secondary Variants in Individuals Undergoing Exome Sequencing: Screening of 572 Individuals Identifies High-Penetrance Mutations in Cancer-Susceptibility Genes

(2012) Jennifer J. Johnston et al.   AMERICAN JOURNAL OF HUMAN GENETICS

Informed consent for whole genome sequencing: A qualitative analysis of participant expectations and perceptions of risks, benefits, and harms

(2012) Holly K. Tabor et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

Seeking consent to genetic and genomic research in a rural Ghanaian setting: A qualitative study of the MalariaGEN experience

(2012) Paulina Tindana et al.   BMC Medical Ethics

Reactions, beliefs and concerns associated with providing hair specimens for medical research among a South African sample: a qualitative approach

(2012) Bronwyne Coetzee et al.   Future Virology

The past, present and future of the debate over return of research results and incidental findings

(2012) Susan M. Wolf   GENETICS IN MEDICINE

The legal risks of returning results of genomics research

(2012) Ellen Wright Clayton et al.   GENETICS IN MEDICINE

IRB perspectives on the return of individual results from genomic research

(2012) Lynn G. Dressler et al.   GENETICS IN MEDICINE

Exploring concordance and discordance for return of incidental findings from clinical sequencing

(2012) Robert C. Green et al.   GENETICS IN MEDICINE

Managing incidental findings and research results in genomic research involving biobanks and archived data sets

(2012) Susan M. Wolf et al.   GENETICS IN MEDICINE

Genomic sovereignty and the African promise: mining the African genome for the benefit of Africa

(2012) Jantina de Vries et al.   JOURNAL OF MEDICAL ETHICS

Incidental Medical Information in Whole-Exome Sequencing

(2012) B. D. Solomon et al.   PEDIATRICS

There is nothing ‘incidental’ about unrelated findings

(2012) Gholson J Lyon   Personalized Medicine

Whole-Genome Sequencing: The New Standard of Care?

(2012) L. R. Brunham et al.   SCIENCE

Evolution and Functional Impact of Rare Coding Variation from Deep Sequencing of Human Exomes

(2012) J. A. Tennessen et al.   SCIENCE

Investigating the potential for ethnic group harm in collaborative genomics research in Africa: Is ethnic stigmatisation likely?

(2012) Jantina de Vries et al.   SOCIAL SCIENCE & MEDICINE

A Genome-Wide Association Study Identifies Five Loci Influencing Facial Morphology in Europeans

(2012) Fan Liu et al.   PLoS Genetics

Genomics really gets personal: How exome and whole genome sequencing challenge the ethical framework of human genetics research

(2011) Holly K. Tabor et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

Ethical issues in human genomics research in developing countries

(2011) Jantina de Vries et al.   BMC Medical Ethics

Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time

(2011) Jonathan S Berg et al.   GENETICS IN MEDICINE

Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy

(2011) Annelien L. Bredenoord et al.   HUMAN MUTATION

Charting a course for genomic medicine from base pairs to bedside

(2011) Eric D. Green et al.   NATURE

Whole-genome resequencing in pharmacogenomics: moving away from past disparities to globally representative applications

(2011) Britt I Drögemöller et al.   PHARMACOGENOMICS

Research Practice and Participant Preferences: The Growing Gulf

(2011) S. B. Trinidad et al.   SCIENCE

Informed Consent in Genomics and Genetic Research

(2010) Amy L. McGuire et al.   Annual Review of Genomics and Human Genetics

Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya

(2010) Vicki M Marsh et al.   BMC Medical Ethics

Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants

(2010) Richard R. Fabsitz et al.   Circulation-Cardiovascular Genetics

Human Subjects Protections in Community-Engaged Research: A Research Ethics Framework

(2010) Lainie Friedman Ross et al.   Journal of Empirical Research on Human Research Ethics

Complete Khoisan and Bantu genomes from southern Africa

(2010) Stephan C. Schuster et al.   NATURE

Ancestry and Disease in the Age of Genomic Medicine

(2010) Charles N. Rotimi et al.   NEW ENGLAND JOURNAL OF MEDICINE

Assessing the Privacy Risks of Data Sharing in Genomics

(2010) C. Heeney et al.   Public Health Genomics

Patient Perspectives on Group Benefits and Harms in Genetic Research

(2010) A.J. Goldenberg et al.   Public Health Genomics

Offering Individual Genetic Research Results: Context Matters

(2010) L. M. Beskow et al.   Science Translational Medicine

Ethical and practical challenges surrounding genetic and genomic research in developing countries

(2009) Aceme Nyika   ACTA TROPICA

Public Opinion about the Importance of Privacy in Biobank Research

(2009) David J. Kaufman et al.   AMERICAN JOURNAL OF HUMAN GENETICS

Inferential Genotyping of Y Chromosomes in Latter-Day Saints Founders and Comparison to Utah Samples in the HapMap Project

(2009) Jane Gitschier   AMERICAN JOURNAL OF HUMAN GENETICS

Impact of social stigma on the process of obtaining informed consent for genetic research on podoconiosis: a qualitative study

(2009) Fasil Tekola et al.   BMC Medical Ethics

Composition, training needs and independence of ethics review committees across Africa: are the gate-keepers rising to the emerging challenges?

(2009) A Nyika et al.   JOURNAL OF MEDICAL ETHICS

Data sharing in genomics — re-shaping scientific practice

(2009) Jane Kaye et al.   NATURE REVIEWS GENETICS

Ethical Data Release in Genome-Wide Association Studies in Developing Countries

(2009) Michael Parker et al.   PLOS MEDICINE

Tailoring Consent to Context: Designing an Appropriate Consent Process for a Biomedical Study in a Low Income Setting

(2009) Fasil Tekola et al.   PLoS Neglected Tropical Diseases

Genetic studies of African populations: an overview on disease susceptibility and response to vaccines and therapeutics

(2008) Giorgio Sirugo et al.   HUMAN GENETICS

The Law of Incidental Findings in Human Subjects Research: Establishing Researchers' Duties

(2008) Susan M. Wolf et al.   JOURNAL OF LAW MEDICINE & ETHICS

A global network for investigating the genomic epidemiology of malaria

(2008) Eric Akum Achidi et al.   NATURE

South Africa: from species cradle to genomic applications

(2008) Billie-Jo Hardy et al.   NATURE REVIEWS GENETICS

Research Ethics Recommendations for Whole-Genome Research: Consensus Statement

(2008) Timothy Caulfield et al.   PLOS BIOLOGY

Resolving Individuals Contributing Trace Amounts of DNA to Highly Complex Mixtures Using High-Density SNP Genotyping Microarrays

(2008) Nils Homer et al.   PLoS Genetics