Recently, Wiley was honored to sponsor a bursary for Dr. Mary Kasule, Assistant Director of Research Ethics at the University of Botswana, to attend the 13th World Congress of Bioethics. This biennial conference is the largest gathering of bioethics thought-leaders in the world, which this year took place in Edinburgh, Scotland.
We previously got to know Dr. Kasule in this lovely Q&A, and were able to catch up with her after the conference to see how it went.
FN: Welcome back from Edinburgh! How did your poster presentation go?
MK: I must say the presentation went well. The title was “Practical and ethical challenges posed in obtaining parental informed consent for HIV clinical trials research with pediatric patients: A case of Botswana,” which fell under the conference’s Global Bioethics theme. Challenges mainly focused on the readability of the consent forms, information disclosure process by the study staff, parental comprehension of information disclosed, and parental motivation to enroll children into HIV clinical trials.
In his welcome address, Professor Graeme Laurie mentioned that the congress would be attended by 700 delegates, and the thought that all these people might visit my poster gave me nightmares and butterflies in my stomach! Indeed, so many viewers visited my poster that I lost count!
I had active discussions with viewers and received very informative feedback on the findings, which will enrich my future work. My general observation was that there was a huge difference in viewers’ opinions and appreciation of my findings. We debated if my findings were critical or not, and whether or not these findings needed solutions. I noticed a wide difference of opinions between members of western and non-western societies. According to the questions and comments I got, most western viewers were surprised that in non-western countries, consent is being sought on more than one level, which reflects communalism. On the other hand, a majority of non-western viewers admitted to having faced similar challenges which required immediate solutions. These differences are likely to majorly impact collaborative research.
FN: How wonderful to be able to discuss your research with your peers, and get such engaged feedback. How was the conference itself?
MK: If I could summarize it in two words, I would say, “amazing and successful.” It was invigorating, inspirational, and informative – there was so much to do and learn!
I felt proud and honored to be part of the proceedings and to contribute to such a noble cause. I’d like to express my sincere appreciation to John Wiley & Sons, who sponsored my travel as part of its initiative to further support the bioethics community. And, a big “thank you” to the University of Botswana for its support.
FN: You’re welcome. We are thrilled to support you in your amazing endeavors.
MK: The venue (Assembly Rooms) is a huge and impressive 18th century event space. The conference itself had such a variety of sessions that choosing which to attend was a challenge! Prior to each day, I made sure I went through the program very carefully for fear of getting lost. I later realized one could not get lost, as everyone was kind and ready to help.
FN: What was your favorite session?
MK: Because of my background, I tried to attend sessions related to bioethics and public health. The keynote address by Professor Alastair V. Campbell (Director of the Centre for Biomedical Ethics at the National University of Singapore) was hilarious and very inspirational. He made the audience laugh when he referred to himself as, “the Accidental Bioethicist,” and described, “what makes God laugh.” His advice was a very good take-home message for me – “You need to follow what you truly care about.”
When Professor Florencia Luna from CONICET (National Scientific and Technological Research Council, Argentina) gave her key note address on “Women and (NON) Ethical Places: The Case of Zika,” you could hear a pin drop! It was deeply touching! She described the disproportionate harms of the Zika virus to poor women from endemic areas, which I thought was similar to what HIV and Ebola virus have done to women in many sub-Saharan countries. It was very sad to hear her say, “Simply referring to the situation ignores the stories and the suffering, anguish, and abandonment of women affected by the epidemic. There is need to look into women’s social and economic disadvantages, gender bias, their exclusion from research to avoid perpetuating poverty, and increased gender bias as well as social and health disparity.” Bioethicists and governments have a very big role to play through reviewing research regulatory guidelines and laws that exclude women from health research.
FN: It sounds like you were able to hear from so many inspirational experts in bioethics. Will you tell us more about new things you learned?
MK: Ah! There were so many interesting sessions relevant to my carrier, which made choosing difficult. I had to make very calculated choices. Something new I learned is that the bioethics community is quite big in western countries, and sub-Saharan Africa is still lagging behind. With more collaboration and networking, it would be possible to build research ethics capacity in sub-Saharan Africa.
FN: When we first spoke, you outlined what you think are the biggest public health priorities for Botswana today. Did you find that others had similar issues they are grappling in their own regions? How did Botswana’s public health priorities compare and contrast with other countries?
MK: I would say strengthening health systems as well epidemiological control of communicable and non-communicable diseases remain universal challenges.
FN: Who did you enjoy meeting the most? What did you discuss together?
MK: I did get to talk to many people, but because on my bioethics background I was lucky to speak with Professor Luna after her inspirational key note address. We shared views and opinions about ethical issues associated with research involving pregnant women and their exclusion from research as a vulnerable group which results in a lack of research evidence for medications to treat pregnant women. Since there wasn’t much time, we exchanged cards to continue the discussion over email. Hopefully I will meet her again at IAB 2018 in New Delhi, or at other bioethics forums!
FN: What is next for you and your research, and how will your experience at IAB help inform that?
MK: Well, there were so many stimulating ideas, but all of them require funding. Now that I’ve had such great discussions and gotten advice from early carrier researcher sessions, I should be able to apply for research funding do more research and publish more.
FN: Do you have any other anecdotes you’d like to share with our readers?
The closing ceremony was full of drama with the competition on pronunciation of Scottish phrases by some delegates. That was a mutilation of the Scottish language!
The atmosphere was full joy and tears for those who won prizes. I would like to congratulate one of our own from Africa, Dr. Nicola Barsdorf (Head of Health Research Ethics at Stellenbosch University), who placed second in the Medical Ethics Poster Prize. She made us proud!
The breathtaking video shown to advertise the IAB 2018 (to take place in New Delhi!) gave delegates hope of meeting again. This video demonstrated the need for more research on the social determinants of priority public health problems, and how a health-systems-strengthening approach can contribute to more effective program delivery and health outcomes.
FN: We look forward to seeing what great things you’ve achieved at the next World Congress of Bioethics. Thank you so much for sharing your experience with us!
This bursary was sponsored by Wiley on behalf of its bioethics journals.
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