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Understanding Ethical, Legal and Societal Issues (ELSIs) in Human Biobanking and Genomics for Research and Healthcare in Zimbabwe: The Genomics Inheritance Law Ethics and Society (GILES) initiative.

ABSTRACT: Biobanks and human genomics applications are key for understanding health, disease and heredity in Africa and globally. Growing interest in these technologies calls for strengthening relevant legal, ethical and policy systems to address knowledge disparities and ensure protection of society, while supporting advancement of science. In Zimbabwe there is limited understanding of ethical, legal, and societal issues (ELSI) for biobanking and genomics. The Genomics Inheritance Law Ethics and Society (GILES) initiative was established in 2015 to explore the current status and gaps in the ethical and legal frameworks, knowledge among various stakeholders, and to establish capacity for addressing ELSI of biobanking and genomics as applied in biomedical and population research, and healthcare. The project was conducted over a countrywide geographical region and established one of the most comprehensive studies for ELSI of human biobanking and genomics in Africa. This paper outlines the strategy undertaken during the implementation of the GILES initiative and discusses the importance of such an initiative for characterisation of ELSI of human biobanking and genomics in Zimbabwe and Africa.

SUBMITTER: Matimba A

PROVIDER: S-EPMC7194152 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Understanding Ethical, Legal and Societal Issues (ELSIs) in Human Biobanking and Genomics for Research and Healthcare in Zimbabwe: The Genomics Inheritance Law Ethics and Society (GILES) initiative.

Matimba Alice A Chimatira Andrew A Kuguyo Oppah O January James J Mupambireyi Zivayi Z Marimbe-Dube Bazondlile B Chikwasha Vasco V Nyati-Jokomo Zibusiso Z Muteti Shamiso S Mangezvo Pedzisayi P Kangwende Abigail A Chingono Alfred A Chidzonga Midion M Gandari Jonathan J Hakim James J Nathoo Kusum K Samkange Christopher C Mangezi Walter W Lee Sandra S Gwanzura Lovemore L Cho Mildred M Ndebele Paul P

AAS open research 20190612

Biobanks and human genomics applications are key for understanding health, disease and heredity in Africa and globally. Growing interest in these technologies calls for strengthening relevant legal, ethical and policy systems to address knowledge disparities and ensure protection of society, while supporting advancement of science. In Zimbabwe there is limited understanding of ethical, legal, and societal issues (ELSI) for biobanking and genomics. The Genomics Inheritance Law Ethics and Society ...[more]

PMID: 32382699

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Project description:BackgroundUnderstanding the perception of patients on research ethics issues related to biobanking is important to enrich ethical discourse and help inform policy.MethodsWe examined the views of leukemia patients undergoing treatment in clinics located in the Princess Margaret Hospital in Toronto, Ontario, Canada. An initial written survey was provided to 100 patients (64.1% response rate) followed by a follow-up survey (62.5% response rate) covering the topics of informed consent, withdrawal, anonymity, incidental findings and the return of results, ownership, and trust.ResultsThe majority (59.6%) preferred one-time consent, 30.3% desired a tiered consent approach that provides multiple options, and 10.1% preferred re-consent for future research. When asked different questions on re-consent, most (58%) reported that re-consent was a waste of time and money, but 51.7% indicated they would feel respected and involved if asked to re-consent. The majority of patients (62.2%) stated they had a right to withdraw their consent, but many changed their mind in the follow-up survey explaining that they should not have the right to withdraw consent. Nearly all of the patients (98%) desired being informed of incidental health findings and explained that the information was useful. Of these, 67.3% of patients preferred that researchers inform them and their doctors of the results. The majority of patients (62.2%) stated that the research institution owns the samples whereas 19.4% stated that the participants owned their samples. Patients had a great deal of trust in doctors, hospitals and government-funded university researchers, moderate levels of trust for provincial governments and industry-funded university researchers, and low levels of trust towards industry and insurance companies.ConclusionsMany cancer patients surveyed preferred a one-time consent although others desired some form of control. The majority of participants wanted a continuing right to withdraw consent and nearly all wanted to be informed of incidental findings related to their health. Patients had a great deal of trust in their medical professionals and publically-funded researchers as opposed to profit-based industries and insurance companies.

Project description:BackgroundBiobanking and genomic research requires collection and storage of human tissue from study participants. From participants' perspectives within the African context, this can be associated with fears and misgivings due to a myriad of factors including myths and mistrust of researchers. From the researchers angle ethical dilemmas may arise especially with consenting and sample reuse during storage. The aim of this paper was to explore these ethical considerations in the establishment and conduct of biobanking and genomic studies in Africa.MethodsWe conducted a narrative synthesis following a comprehensive search of nine (9) databases and grey literature. All primary research study designs were eligible for inclusion as well as both quantitative and qualitative evidence from peer reviewed journals, spanning a maximum of 20 years (2000-2020). It focused on research work conducted in Africa, even if data was stored or analysed outside the region.ResultsOf 2,663 title and abstracts screened, 94 full texts were retrieved and reviewed for eligibility. We included 12 studies (7 qualitative; 4 quantitative and one mixed methods). Ethical issues described in these papers related to community knowledge and understanding of biobanking and genomic research, regulation, and governance of same by research ethics committees, enrolment of participants, types of informed consents, data collection, storage, usage and sharing as well as material transfer, returning results and benefit sharing. ca. Biospecimen collection and storage is given in trust and participants expect confidentially of data and results generated. Most participants are comfortable with broad consent due to trust in researchers, though a few would like to be contacted for reconsenting in future studies, and this would depend on whether the new research is for good cause. Sharing data with external partners is welcome in some contexts but some research participants did not trust foreign researchers.ConclusionBiobanking and genomic studies are a real need in Africa. Linked to this are ethical considerations related to setting up and participation in biobanks as well as data storage, export, use and sharing. There is emerging or pre-existing consensus around the acceptability of broad consent as a suitable model of consent, the need for Africans to take the lead in international collaborative studies, with deliberate efforts to build capacity in local storage and analysis of samples and employ processes of sample collection and use that build trust of communities and potential study participants. Research ethics committees, researchers and communities need to work together to work together to adapt and use clearly defined ethical frameworks, guidelines, and policy documents to harmonize the establishment and running of biobanking and genomic research in Africa.

Project description:Sustainability is typically viewed as consisting of three forces, economic, social, and ecological, in tension with one another. In this paper, we address the dangers posed to societal sustainability. The concern being addressed is the very survival of societies where the rights of individuals, personal and collective freedoms, an independent judiciary and media, and democracy, despite its messiness, are highly valued. We argue that, as a result of various technological innovations, a range of dysfunctional impacts are threatening social and political stability. For instance, robotics and automation are replacing human labor and decision-making in a range of industries; search engines, monetized through advertising, have access to, and track, our interests and preferences; social media, in connecting us to one another often know more about us than we ourselves do, enabling them to profit in ways which may not coincide with our well-being; online retailers have not only acquired the ability to track and predict our buying choices, but also they can squeeze vendors based on their outsize bargaining power; and, in general, virtual technologies have changed both the way we think and our sense of self. With the rising deployment of the Internet of Things, and developments in machine learning and artificial intelligence, the threats to individual freedoms and rights, societal cohesion and harmony, employment and economic well-being, and trust in democracy are being ratcheted up. This paper lauds the benefits and addresses the harm wrought by the high tech giants in Information and Communication Technologies (ICTs). The search for rapidly growing revenues (and shareholder returns and stock prices) drives firms to accelerate product innovation without fully investigating the entire gamut of their impacts. As greater wealth accrues to the leaders of tech firms, inequalities within firms and societies are widening, creating social tensions and political ferment. We explore the ethical nature of the challenge employing a simple utilitarian calculus, complemented by approaches rooted in rights, justice, and the common good. Various options to address the challenges posed by ICTs are considered and evaluated. We argue that regulation may do little more than slow down the damage to society, particularly since societal values and political preferences vary internationally. Firms need to establish ethical standards, imbuing the upholders of these standards with sufficient authority, while creating a culture of morality. User involvement and activism, and shareholders' concerns for the sustainability of societies on whose continued prosperity they depend, are imperative to humanity's ability to decide the future direction of technology.

Dataset Information

Understanding Ethical, Legal and Societal Issues (ELSIs) in Human Biobanking and Genomics for Research and Healthcare in Zimbabwe: The Genomics Inheritance Law Ethics and Society (GILES) initiative.

Publications

Understanding Ethical, Legal and Societal Issues (ELSIs) in Human Biobanking and Genomics for Research and Healthcare in Zimbabwe: The Genomics Inheritance Law Ethics and Society (GILES) initiative.

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