Human genomic research ethics:

2017 ◽  
pp. 203-214 ◽  
Author(s):  
Steven H. Miles
Keyword(s):  
Research Ethics ◽  
Genomic Research ◽  
Human Genomic

Charles Rotimi: engaging Africa in human genomic research

The Lancet ◽  
2010 ◽  
Vol 376 (9750) ◽  
pp. 1383 ◽  
Author(s):  
Kelly Morris
Keyword(s):  
Genomic Research ◽  
Human Genomic

Ethical issues in genomic research: Proposing guiding principles co-produced with stakeholders

2018 ◽  
Vol 13 (4) ◽  
pp. 194-198
Author(s):  
D Carrieri ◽  
L Jackson ◽  
C Bewshea ◽  
B Prainsack ◽  
J Mansfield ◽  
...  
Keyword(s):  
Research Ethics ◽  
Support Groups ◽  
Healthcare Professionals ◽  
Ethical Issues ◽  
Ethics Committees ◽  
Genomic Research ◽  
Research Ethics Committees ◽  
Patient Support ◽  
Research Teams ◽  
The Uk

Ethical guidance for genomic research is increasingly sought and perceived to be necessary. Although there are pressing ethical issues in genomic research – concerning for example the recruitment of patients/participants; the process of taking consent; data sharing; and returning results to patients/participants – there is still limited useful guidance available for researchers/clinicians or for the research ethics committees who review such projects.  This report outlines the ethical principles and guidance for genomic research co-produced with stakeholders during two workshops which took place in the UK between November 2016 and May 2017. The stakeholders involved in these workshops included: healthcare professionals, genomic research teams, academics, patients, biobank managers, and representatives from the Health Research Authority (HRA), NHS Research Ethics Committees, patient support groups, pharmaceutical industry, and health policy think tanks. The co-produced principles and guidance are specifically aimed at researchers/clinicians and members of NHS Research Ethics Committees, and are formulated with the intention to be clear and accessible, both in terms of content and language, to these groups.

International Guidelines for Privacy in Genomic Biobanking (or the Unexpected Virtue of Pluralism)

2015 ◽  
Vol 43 (4) ◽  
pp. 690-702 ◽  
Author(s):  
Adrian Thorogood ◽  
Ma'n H. Zawati
Keyword(s):  
Medical Records ◽  
Global Scale ◽  
Outcome Data ◽  
Genomic Research ◽  
Individual Privacy ◽  
Physical Measurements ◽  
Health Related ◽  
Human Genomic ◽  
Epidemiological Information ◽  
Human Biological Material

In an era of unrivalled sequencing, computation and networking capability, international sharing of genomic samples and data is becoming a modus operandi for modern medical research. Researchers are collaborating to establish large collections with global scale. Having never before set foot outside the cell, the molecules that shape us are being digitized and launched across the globe. Protecting individual privacy interests in this information is a central challenge of the genomic research era.This article reviews international privacy norms governing human genomic biobanks and databases. It will not directly consider biobanks established for other health-related purposes, such as screening or therapy. A genomic biobank is “a hybrid infrastructure,” an organized collection of human biological material combined with associated health information: physical measurements, outcome data in medical records, and epidemiological information, as well as genomic data derived from the samples.

scholarly journals Genomic Literacy and Awareness of Ethical Guidance for Genomic Research in Sub-Saharan Africa: How Prepared Are Biomedical Researchers?

2018 ◽  
Vol 14 (1) ◽  
pp. 78-87 ◽  
Author(s):  
Olubunmi Ogunrin ◽  
Funmilola Taiwo ◽  
Lucy Frith
Keyword(s):  
Research Ethics ◽  
African Country ◽  
Sub Saharan Africa ◽  
Genomic Research ◽  
Educational Training ◽  
Ethical Guidance ◽  
Sub Saharan ◽  
Depth Interviews ◽  
Genomic Literacy ◽  
Ethical Oversight

Achieving the objectives of rolling out genomic research programs in sub-Saharan Africa depends on how prepared indigenous biomedical researchers are for this type of research. We explored the level of preparedness of biomedical researchers in a sub-Saharan African country using in-depth interviews to obtain data on their understanding of genomics and genomic research and assess their awareness of the scope of the country’s code of health research ethics. Thirty biomedical researchers were interviewed. Only eight were familiar with concepts of genomics, a form of “genomic health literacy.” The majority were not aware of the country’s code of research ethics. This study showed that generally biomedical researchers were not genomic health literate, unaware of the code and its limitations as a source of ethical guidance for the conduct of genomic research. These findings underscore the need for educational training in genomics and creating awareness of ethical oversight for genomic research in sub-Saharan Africa.

scholarly journals Research Ethics 2.0: New Perspectives on Norms, Values, and Integrity in Genomic Research in Times of Even Scarcer Resources

2017 ◽  
Vol 20 (1) ◽  
pp. 27-35 ◽  
Author(s):  
Caroline Brall ◽  
Els Maeckelberghe ◽  
Rouven Porz ◽  
Jihad Makhoul ◽  
Peter Schröder-Bäck
Keyword(s):  
Research Ethics ◽  
Genomic Research

scholarly journals Developing the science and methods of community engagement for genomic research and biobanking in Africa

2017 ◽  
Vol 2 ◽  
Author(s):  
P. Tindana ◽  
M. Campbell ◽  
P. Marshall ◽  
K. Littler ◽  
R. Vincent ◽  
...  
Keyword(s):  
Public Health ◽  
South Africa ◽  
Community Engagement ◽  
Working Group ◽  
Agricultural Development ◽  
Public Health Education ◽  
Genomic Research ◽  
Human Heredity ◽  
African Context ◽  
Human Genomic

Historically, community engagement (CE) in research has been implemented in the fields of public health, education and agricultural development. In recent years, international discussions on the ethical and practical goals of CE have been extended to human genomic research and biobanking, particularly in the African context. While there is some consensus on the goals and value of CE generally, questions remain about the effectiveness of CE practices and how to evaluate this. Under the auspices of the Human Heredity and Health in Africa Initiative (H3Africa), the H3Africa CE working group organized a workshop in Stellenbosch, South Africa in March 2016 to explore the extent to which communities should be involved in genomic research and biobanking and to examine various methods of evaluating the effectiveness of CE. In this paper, we present the key themes that emerged from the workshop and make a case for the development of a rigorous application, evaluation and learning around approaches for CE that promote a more systematic process of engaging relevant communities. We highlight the key ways in which CE should be embedded into genomic research and biobanking projects.

scholarly journals Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model

2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Paulina Tindana ◽  
◽  
Aminu Yakubu ◽  
Ciara Staunton ◽  
Alice Matimba ◽  
...  
Keyword(s):  
Best Practices ◽  
Research Ethics ◽  
Ethics Committees ◽  
Genomic Research ◽  
Research Ethics Committees ◽  
Ethical Challenges ◽  
Governance Framework ◽  
Regulatory Frameworks ◽  
Engagement Process ◽  
Genomic Studies

Abstract In the past decade, there has been an increase in genomic research and biobanking activities in Africa. Research initiatives such as the Human Heredity and Health in Africa (H3Africa) Consortium are contributing to the development of scientific capacity and infrastructure to support these studies on the continent. Despite this growth, genomic research and biobanking have raised important ethical challenges for key research stakeholders, including members of research ethics committees. One of these is the limited ethical and regulatory frameworks to guide the review and conduct of genomic studies, particularly in Africa. This paper is a reflection on a series of consultative activities with research ethics committees in Africa which informed the development of an ethics and governance framework for best practices in genomic research and biobanking in Africa. The paper highlights the engagement process and the lessoned learned.

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