Ethics & Engagement across the Wellcome Trust Major Overseas Programmes
I am delighted to present to you the preliminary results for my bursary project and some of my experiences so far.
I think all of you know my project by now. However I will skim through the background and methods for those that are hearing it for the first time.
Background – Biometrics is the science of establishing the identity of an individual based on their physical attributes. Ethical concerns around their appropriate usage have been raised; especially in resource-poor setting. The study reported here explores the bioethical perceptions of policy makers, implementers and biometrics clients on the use of biometrics within the health care system in Malawi.
Methods – We conducted a qualitative study with 30 people within the Malawian health care system. Data collection was done at policy, health service and community levels. Views were elicited through semi-structured interviews. Data analysis was aligned to thematic analysis.
Interim Results – The three overarching ethical issues that emerged from the data include:
(1) Informed use, (2) Privacy and confidentiality (3) Equitable access.
Informed Use- Implementers and policy makers had a much better understanding of biometrics than biometrics clients (patients). Responses from biometrics clients showed that there was no or very little public engagement or awareness about biometrics amongst community stakeholders.
Privacy and confidentiality- A second important ethical issue related to confidentiality and privacy. Participants discussed ways that biometrics could minimise risks related to confidentiality posed by the current paper-based system. On the other hand implementers and policy makers were skeptical about the security of the biometrics data from hackers and western researchers.
Equitable Access -Both implementers and clients recognised the importance of biometrics in speeding up the flow of patients through the health care system. Views about the importance of equitable access were consistent amongst the biometric clients and the implementers.
Conclusion – Implementation of biometrics within a health care system in Malawi poses a range of potential ethical issues. There is a need for more research to explore the benefits and harms of biometrics in practice. Furthermore, there is need for further discussion among stakeholders to weigh up risks/benefits and identify ethical and feasible policy option.
Manuscript – A manuscript for this study has been drafted to be submitted for publication. However, we are still working on the results and discussion sections together with my supervisors but with more focus on the themes followed by theoretical underpinning. We are also yet to identify the suitable journal for submission.
Dissemination of Results -The above interim results were presented at the following conferences:
This bursary offered me invaluable knowledge and experience in qualitative research. It also opened doors for very important collaborations with both international and local researchers. For instance:
Challenges - I did not face major challenges in the implementation or analysis phase. However I faced some hurdles when I was drafting the manuscript due to the fact that some of the papers that I needed to read were not free. This was resolved by emailing the titles to my supervisors to download them. I did not face any ethics-related challenges during the implementation or analysis phase of my project.
Intended use of the results: This project is the first of its kind in Malawi to explore the ethics of integrating the use of biometrics with the health care system. The results has the potential of being used as the benchmark to all upcoming research studies on biometrics within the health care system and medical research carried out at the Malawi Liverpool Welcome Trust, College of Medicine and at a national level.
Personal Comments: I would strongly recommend young researcher to apply for a bursary as it the best way to get research experience before applying for big grants.
Many thanks to you all for your tireless support through out this exciting journey.
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