Bioethicist Dr. Mary Kasule Recaps the 2016 World Congress of Bioethics

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. We caught up with her after the conference to see how it went.

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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?

Mary Kasule research world congress bioethics
Dr. Mary Kasule presents her research at the World Congress of Bioethics (IAB 2016).

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?

Mary Kasule World Congress Bioethics
Dr. Kasule proudly waving the Union Jack and the flag of Scotland.

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?

Edinburgh castle
Edinburgh Castle, as seen by Dr. Kasule.

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.

fogarty fellows world congress bioethics
Dr. Kasule and other Fogarty Fellows at the World Congress of Bioethics.

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?

street edinburgh
A street in Edinburgh, as seen by Dr. Kasule.

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.

Read the latest in bioethics from your peers around the world, and submit your paper today. Click on the journals below to discover groundbreaking research.

the hastings center report
The Hastings Center Report explores ethical, legal, and social issues in medicine and healthcare.
dewb april 2016 cover image
Developing World Bioethics is the only journal dedicated exclusively to developing countries’ bioethics issues.
bioethics june 2016 cover
Bioethics is the official journal of the International Association of Bioethics.

 

 

 

 

 

 

 

 

 

 

 

Let’s Recap LGBTQ Pride Month 2016

With the final day of June, LGBTQ Pride Month comes to a close for 2016. The Wiley Blackwell Team hopes to serve the LGBTQ Community by continuing the much needed discussion. As a reminder, all of the curated research collections for Pride Month will be freely available through July 31.

With the final day of June, LGBTQ Pride Month comes to a close for 2016. Just last year, same-sex marriage was federally legalized in the United States. In sharp contrast, this year’s pride month was shadowed by the devastation of the Orlando shootings. We were all painfully reminded that despite great strides made by the LGBTQ community, hate and inequality still run rampant. Through this grim reality, the outpour of love and support that emerged from such a violent act of hate is a testament of hope and strength.

LGBTQ Pride 2016

Thanks for visiting us each week this month to continue the necessary discussion on LGBTQ rights and issues. As a reminder, all of the curated research collections for Pride Month will be freely available through July 31.


LGBTQ Pride Month in the News

LGBT Rights in National Constitutions – would they make a difference in the US and

OrlandoNightSkyline
The OneOrlando Fund is an official fund to provide support and relief to the Pulse nghtclub victims and their families.

globally? Huffington Post

 

‘They Were So Beautiful’: Remembering Those Murdered In Orlando NPR

Pope Francis: Catholics Should Apologize to the LGBT Community Advocate

Stonewall Inn Recognized as National Monument to Gay Rights The Wall Street Journal

 

White_House_rainbow_colors_to_celebrate_June_2015_SCOTUS_same-sex_marriage_ruling
June 26, 2015 – White House lit with rainbow colors to celebrate SCOTUS same-sex marriage ruling.

Mapping the Rise of Anti-LGBT Legislation on the First Anniversary of Nationwide Marriage Equality The Atlantic’s CityLab

 

Charlotte Schools Set New Transgender Bathroom Policy The Wall Street Journal

NBA, WNBA Are First Pro Sports Leagues to March in NYC LGBT Pride Parade Rolling Stone

 


Pride on The Philosopher’s Eye

LGBTQ Rights
This collection explores the past, present, an future of LGBTQ law, politics, and activism which seeks to ensure effective change in social policy and legislation. Read more.
LGBT Family
This collection explores the complexities of social, ethical, and psychology themes of LGBTQ families and relationships, covering topics from sexual health to marriage equality. Read more.
People are people. And family is family.
Wiley Journal Publishing Manager Brian Giblin share a personal reflection on pride, identity, and coming out. Read more.
Trans Issues
Tackling complex issues that transgender and gender nonconforming people face, the collection covers topics such as cultural inclusion and representation, healthcare advocacy and treatment, institutional discrimination, violence, and many more. Read more.
stethoscope.jpg
Interview: Patient Practice for Transgender and Gender-Nonconforming Youth with Dr. Christine Aramburu Alegria. Listen now.
LGBT Awareness Banner
This collection focuses on Awareness and Education, covering a wide array of topics such as intersectionality, gender identity, and institutional inclusion. Read more.

Interview : Patient Practice for Transgender and Gender-Nonconforming Youth

In an original podcast, Wiley’s Senior Marketing Manager Kathleen Mulcahy interviews Orvis School of Nursing’s Dr. Christine Aramburu Alegría on her clinical practice article titled, “Gender nonconforming and transgender children/youth: Family, community, and implications for practice,” published in the Journal of the American Association of Nurse Practitioners.

For this week of LGBTQ Pride Month, we continue our thematic exploration in Trans Issues. In an original podcast, Wiley’s Senior Marketing Manager Kathleen Mulcahy interviews Orvis School of Nursing’s Dr. Christine Aramburu Alegría on her clinical practice article titled, “Gender nonconforming and transgender children/youth: Family, community, and implications for practice,” published in the Journal of the American Association of Nurse Practitioners. Along with podcast, we have also included a transcript below.

Earlier this week we released a free collection of research articles related to a variety of transgender and gender nonconforming topics, Dr. Aramburu Alegría’s article is among this collection.

Don’t forget to come back each Monday as we post articles and think pieces from Wiley authors and LGBTQ advocates centered around a unique theme. Thanks for joining us as we continue the necessary conversation on LGBTQ rights, awareness, and support.


 


Podcast Transcript

Continue reading “Interview : Patient Practice for Transgender and Gender-Nonconforming Youth”

Trans Issues

This collection promotes awareness and exploration of gender identity and expression. Tackling complex issues that transgender and gender nonconforming people face, the collection covers topics such as cultural inclusion and representation, healthcare advocacy and treatment, institutional discrimination, violence, and many more.

Trans Issues

For the third week of LGBTQ Pride Month, we’ve selected articles from our broad journals portfolio under the theme Trans Issues. This collection promotes awareness and exploration of gender identity and expression. Tackling complex issues that transgender and gender nonconforming people face, the collection covers topics such as cultural inclusion and representation, healthcare advocacy and treatment, institutional discrimination, violence, and many more. Enjoy this research freely through July 31, and don’t forget to comment and share below.

In addition to this research collection, the Wiley-Blackwell Team has selected some of their favorite resources and history fun-facts about the trans community.

And, don’t forget to come back each Monday as we post articles and think pieces from Wiley authors and LGBTQ advocates centered around a unique theme. Thanks for joining us as we continue the necessary conversation on LGBTQ rights, awareness, and support. Continue reading “Trans Issues”

Q&A with Bioethicist Dr. Mary Kasule

We spoke with Dr. Mary Kasule, Assistant Director of Research Ethics at the University of Botswana, on her bioethics career and upcoming trip to the World Congress of Bioethics in Edinburgh, Scotland.

The 13th World Congress of Bioethics begins tomorrow. This biennial conference is the largest gathering of bioethics thought-leaders in the world, and will this year explore “Individuals, Public Interests and Public Goods: What is the Contribution of Bioethics?” by bringing international academics, practitioners and experts together in Edinburgh, Scotland.

In support of the bioethics community, Wiley is honored to sponsor a bursary for Dr. Mary Kasule, Assistant Director of Research Ethics at the University of Botswanadr mary kasule

Originally from Uganda, Dr. Kasule completed her PhD in Public Health in 2014 with a focus on research ethics and parental informed consent protocol at the University of the Western Cape. Since then, she has held many roles and achievements, including: Secretary to the Botswana National Research Ethics Committee at the Ministry of Health and Research Officer at the Council on Health Research for Development.

Recently, Dr. Kasule published an article with Douglas R. Waasenaar (Fogarty grand award recipient), Carel Ijsselmuiden, and Boitumelo Mokgatla titled, “Silent voices: Current and future roles of African research ethics committee administrators.” The paper, published by The Hastings Center journal IRB: Ethics & Human Research, discusses findings of the first empirical study conducted specifically on the roles, responsibilities, and potential of administrators for African research ethics committees.

We caught up with Dr. Kasule before her trip to discuss her extensive work in bioethics, and what she hopes to see at the World Congress of Bioethics.


FN: We are honored to sponsor your trip to Edinburgh, Dr. Kasule. Thank you for taking the time to answer our questions. First, what sparked your interest in bioethics and public health?

MK: The courses that I took during my Bachelor of Science in Botany and Zoology and Masters in Applied Food Microbiology, as well as my teaching of Anatomy and Physiology, introduced me to most of the components of public health. To be honest, after over 20 years of lecturing at various tertiary health training institutions I felt I needed a change to specialize into something that could embrace my education background and experience gained. I saw studying public health as a gateway to a diversity of carrier opportunities and growth.

My research methodology course with a component of bioethics during my Masters in Public Health training gave me an insight into the importance of bioethics and responsible conduct of research. I also got an opportunity to work as the Secretary for the Botswana Ministry of Health National Ethics Committee (EC). By listening to EC deliberations, I came to realize the importance of good knowledge of bioethics for EC members in moral reasoning, risk/benefit analysis, and decision making. This further motivated me to find opportunities for long-term training in bioethics. I was very lucky to be awarded a scholarship by National Institutes of Health (NIH) to study for a Post Graduate Diploma in International Bioethics. This training also introduced me to research ethics administration – a new, emerging field in research ethics.

Okavango Delta Sunrise, Botswana
Okavango Delta Sunrise, Botswana

FN: What current project of yours are you most excited about?

MK: I am currently serving as the University of Botswana’s coordinator for the Fogarty African Bioethics Consortium, which was started in 2013 by the Johns Hopkins-Fogarty African Bioethics Training Program through a grant by the NIH.  Under the leadership of Prof. Nancy Kass and Prof. Adnan Hyder, the project aims to create a sustainable and viable institutional bioethics consortium. The consortium seeks to advance institutional capacities to promote and pursue bioethics and research ethics activities, including training, bioethics research, bench marking and publishing and service. Through this collaboration, over ten University of Botswana Institutional Review Board members have been trained in bioethics at Johns Hopkins, greatly improving the board’s structure and function. I am hopeful that this collaborative initiative will be extended to other sub-Saharan countries to gradually harmonize their research ethics review processes.

FN: Your bio is quite impressive! From your extensive career in health, what do you think are the biggest public health priorities for Botswana today?

MK: I would say 1) gaining epidemiologic control of HIV with successful implementation of Treat All, 2) strengthening health systems (improved monitoring and evaluation), supply chain management, quality service delivery), 3) rational human resource allocations, mentorship, and capacity building, and 4) integration of comprehensive health service delivery (such as HIV, sexual and reproductive health, tuberculosis, and non-communicable diseases like cardiovascular diseases, diabetes and cancers).

FN: The World Congress of Bioethics will have attendees from quite diverse backgrounds. What unique perspective do you hope to share with others, and vice versa?

MK:  I would like to share experiences and challenges with people involved in research ethics administration regarding building research ethics capacity in their countries, and discuss the present and future of bioethics.

edinburgh scotland
Edinburgh, Scotland

FN: Are there any panels you’re looking forward to seeing? Any people you’re hoping to meet?

 

MK: Dr. Sarah Chan from the Usher Institute for Population Health Sciences and Informatics, University of Edinburgh. She will be chairing a symposium on ‘Exploring International Policy Development in Regenerative Medicine’ and a panel session considering ‘Socio-Ethical and Legal (ELSI) Implications of Genome Editing Technologies.’

I am currently a member of the Ethics Working Group on the Human Health and Heredity initiative aimed at facilitating a contemporary research approach to the study of genomics and environmental determinants of common diseases with the goal of improving the health of African populations. The group aims to develop a robust and supportive ethical and governance framework for genomic research in Africa, and I hope the symposium and panel will inform this work.

I would also like to meet participants working on Informed Consent, like Dr. Danielle Bromwich (Assistant Professor of Bioethics and Metaethics at University of Massachusetts Boston) and Dr. Ana Krivokuca (Institute for Oncology and Radiology of Serbia).

FN: Congratulations on your recently published paper, “Silent Voices: Current and Future Roles of African Research Ethics Committee Administrators”! How will your findings carry over into the World Congress of Bioethics? How do you hope your research will impact bioethics and public health as a whole?

MK: The paper falls under one of this year’s themes: Public Health, Ethics and Law. Effective and efficient ethics reviews are a result of good research ethics administration by well-trained research ethics administrators. The paper emphasizes the need for sub-Saharan African Ethics Committees to have these administrators manage committee operations and implement review administration with explicit focus so that committees achieve their goal – conducting high-quality, timely, and responsible ethics review. Ultimately, this translates into evidence-based policies and decisions for health care services at both individual and population level.

I hope that implementation of this paper’s recommendations would capacitate ethics committees in sub-regions and ultimately in sub-Saharan Africa. This would lead to a tremendous improvement in ethics review process and to harmonization of ethics review processes and practices in the regions and Africa as a whole, thus improvement of the effectiveness and efficiency of ethics committees. The result would be timely reviews that allow conducting research to improve timeliness of public health interventions, health services delivery, health care policies and decision making. And, this could cut down on waste of resources from delayed reviews and loss of funding which depends on timely review of proposals.

FN: Thank you. We wish you safe travels and look forward to speaking upon your return.


This bursary is sponsored by Wiley on behalf of its bioethics journals.

Read the latest in bioethics from your peers around the world, and submit your paper today. Click on the journals below to access groundbreaking research in an increasingly relevant, ever-evolving field, and check back here soon for a post on Dr. Kasule’s top bioethics article picks!

bioethics june 2016 cover
Bioethics, official journal of the International Journal of Bioethics
dewb april 2016 cover image
Developing World Bioethics, the only journal dedicated exclusively to developing countries’ bioethics issues
HAST may 2016 cover cropped
The Hastings Center Report explores ethical, legal, and social issues in medicine, healthcare, and more