scholarly journals Approaches to informed consent for hypothesis-testing and hypothesis-generating clinical genomics research

2012 ◽  
Vol 5 (1) ◽  
Author(s):  
Flavia M Facio ◽  
Julie C Sapp ◽  
Amy Linn ◽  
Leslie G Biesecker
Keyword(s):  
Informed Consent ◽  
Hypothesis Testing ◽  
Clinical Genomics ◽  
Genomics Research

Clinical genomics in the 21st century: The fine balance between ethics and science

2021 ◽  
pp. 147775092110366
Author(s):  
Terence YS Liew ◽  
Chun Y Khoo
Keyword(s):  
Clinical Practice ◽  
Informed Consent ◽  
21St Century ◽  
Preventive Medicine ◽  
Genomic Medicine ◽  
Traditional Practices ◽  
Current Clinical Practice ◽  
Common Goal ◽  
Clinical Genomics ◽  
Ethical Concerns

The 21st century has been revolutionary for the field of clinical genomics, with major advancements and breakthroughs over the years. It is now considered an instrumental tool in clinical and preventive medicine and has been used on a day-to-day basis to complement current clinical practice. However, with advancements in genomics comes greater bioethical concerns, which becomes increasingly complex with more cutting-edge technology. Some of the major ethical concerns include obtaining informed consent, possibility for genetic enhancements and eugenics, genomic equity and potential discrimination and cloning. It is imperative that we appreciate the benefits of genomic medicine in complementing traditional practices, identify and address the ethical concerns with relation to the practice of genomic medicine, and to ensure a common goal of improving human lives. With these in mind, the practice of genomics can have maximum impact in the collective health of the population, with greater benefit to all.

A Computer-Based Education Intervention to Enhance Surrogates' Informed Consent for Genomics Research

2015 ◽  
Vol 24 (2) ◽  
pp. 148-155 ◽  
Author(s):  
A. K. Shelton ◽  
B. D. Freeman ◽  
A. F. Fish ◽  
J. A. Bachman ◽  
L. I. Richardson
Keyword(s):  
Informed Consent ◽  
Education Intervention ◽  
Genomics Research ◽  
Computer Based ◽  
Computer Based Education

Surrogate Consent for Genomics Research in Intensive Care

2009 ◽  
Vol 18 (5) ◽  
pp. 418-426 ◽  
Author(s):  
Ann K. Shelton ◽  
Anne F. Fish ◽  
J. Perren Cobb ◽  
Jean A. Bachman ◽  
Ruth L. Jenkins ◽  
...  
Keyword(s):  
Intensive Care ◽  
Informed Consent ◽  
Health Care Professionals ◽  
Decision Makers ◽  
Major Theme ◽  
Intensive Care Patients ◽  
Genomics Research ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Surrogate decision makers may be poorly prepared to give informed consent for genomics research for their loved ones in intensive care. A review of the challenges and strategies associated with obtaining surrogates’ consent for genomics research in intensive care patients revealed that few well-controlled studies have been done on this topic. Yet, a major theme in the literature is the role of health care professionals in guiding surrogates through the informed consent process rather than simply witnessing a signature. Informed consent requires explicit strategies to approach potential surrogates effectively, educate them, and ensure that informed consent has been attained.

scholarly journals Past, Present, and Future of Informed Consent in Pain and Genomics Research: Challenges Facing Global Medical Community

Pain Practice ◽  
2016 ◽  
Vol 17 (1) ◽  
pp. 8-15 ◽  
Author(s):  
Christian Compagnone ◽  
Michael E. Schatman ◽  
Richard L. Rauck ◽  
Jan Van Zundert ◽  
Monika Kraus ◽  
...  
Keyword(s):  
Informed Consent ◽  
Medical Community ◽  
Research Challenges ◽  
Genomics Research

scholarly journals Qualitative study of comprehension of heritability in genomics studies among the Yoruba in Nigeria

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Rasheed O. Taiwo ◽  
◽  
John Ipadeola ◽  
Temilola Yusuf ◽  
Faith Fagbohunlu ◽  
...  
Keyword(s):  
Informed Consent ◽  
Economic Status ◽  
Group Discussions ◽  
Cultural Concepts ◽  
Local Dialect ◽  
Genomics Research ◽  
Key Informant ◽  
Study Participants ◽  
Technical Terms ◽  
Ibadan Nigeria

Abstract Background With growth of genomics research in Africa, concern has arisen about comprehension and adequacy of informed consent given the highly technical terms used in this field. We therefore decided to study whether there are linguistic and cultural concepts used to communicate heritability of characters, traits and diseases in an indigenous African population. Methods We conducted Focus Group Discussions among 115 participants stratified by sex, age and socio-economic status and Key Informant Interviews among 25 stakeholders and Key Opinion Leaders among Yoruba living in Ibadan, Nigeria. We used Atlas-ti v.8.3.17 software to analyze the data, using thematic approach. Results The study participants identified several linguistic and cultural concepts including words, proverbs, and aphorisms that are used to describe heritable characters, traits and diseases in their local dialect. These included words that can be appropriated to describe dominant and recessive traits, variations in penetrance and dilution of strength of heritable characteristics by time and inter-marriage. They also suggested that these traits are transmitted by “blood”, and specific partner’s blood may be stronger than the other regardless of sex. Conclusions Indigenous Yoruba populations have words and linguistic concepts that describe the heritability of characters, traits and diseases which can be appropriated to improve comprehension and adequacy of informed consent in genomics research. Our methods are openly available and can be used by genomic researchers in other African communities.

scholarly journals Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents

2015 ◽  
Vol 42 (2) ◽  
pp. 132-137 ◽  
Author(s):  
Nchangwi Syntia Munung ◽  
Patricia Marshall ◽  
Megan Campbell ◽  
Katherine Littler ◽  
Francis Masiye ◽  
...  
Keyword(s):  
Informed Consent ◽  
Genomics Research

scholarly journals Education versus screening: the use of capacity to consent tools in psychiatric genomics

2019 ◽  
Vol 46 (2) ◽  
pp. 137-143
Author(s):  
Camillia Kong ◽  
Mehret Efrem ◽  
Megan Campbell
Keyword(s):  
Decision Making ◽  
Human Rights ◽  
Intellectual Disability ◽  
Informed Consent ◽  
Mental Disorder ◽  
Screening Tools ◽  
Relational Autonomy ◽  
Decision Making Capacity ◽  
Genomics Research ◽  
Ethical Tension

Informed consent procedures for participation in psychiatric genomics research among individuals with mental disorder and intellectual disability can often be unclear, particularly because the underlying ethos guiding consent tools reflects a core ethical tension between safeguarding and inclusion. This tension reflects important debates around the function of consent tools, as well as the contested legitimacy of decision-making capacity thresholds to screen potentially vulnerable participants. Drawing on human rights, person-centred psychiatry and supported decision-making, this paper problematises the use of consent procedures as screening tools in psychiatric genomics studies, particularly as increasing normative emphasis has shifted towards the empowerment and participation of those with mental disorder and intellectual disabilities. We expound on core aspects of supported decision-making, such as relational autonomy and hermeneutic competence, to orient consent procedures towards a more educative, participatory framework that is better aligned with developments in disability studies. The paper concludes with an acknowledgement of the pragmatic and substantive challenges in adopting this framework in psychiatric genomics studies if this participatory ethos towards persons with mental disorder and intellectual disability is to be fully realised.

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