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. 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.

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FN: Welcome back from Edinburgh! How did your poster presentation go?

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?

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 18^th 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, 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.

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?

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!

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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 explores ethical, legal, and social issues in medicine and healthcare.

Developing World Bioethics is the only journal dedicated exclusively to developing countries’ bioethics issues.

Bioethics is the official journal of the International Association of Bioethics.

 

 

 

 

 

 

 

 

 

 

 

BIOETHICS DIGEST: Volume 2

Welcome to the second Bioethics Digest, brought to you in association with the editors of the Bioethics Forum. This digest aims to bring you commentary on today’s most topical bioethics issues. The opinions expressed are those of the authors and not The Hastings Center.

After the Supreme Court Decision on Lethal Injection Drug, More Questions

The execution of William Kemmler, August 6, 1890

Last month, the U.S. Supreme Court ruled that Oklahoma’s substitution of midazolam for sodium thiopental as a sedative in lethal injections does not violate the Eighth Amendment prohibition against cruel and unusual punishment. Now, an important question is whether states will even be able to obtain drugs used in capital punishment. Increasing numbers of professional associations that are essential for providing and compounding lethal injection drugs are urging their members not to do so.

The American Pharmacists Association (APhA) recently issued a statement discouraging pharmacists from participating in capital punishment. The APhA joins the American Medical Association, American Nurses Association, and American Board of Anesthesiology in defining capital punishment as inimical to ethical practice for health care professionals. Following on the heels of the APhA resolution, the International Academy of Compounding Pharmacists (IACP) has also declared that active participation of their members in the administration of the death penalty is unethical.

These changes could not come at a better moment, write Lillian Ringel, the Associate Director of the Columbia University Bioethics program, and Stephanie Holmquist is a course facilitator in the Columbia University Bioethics program, in Bioethics Forum, the blog of the Hastings Center Report. The capital punishment landscape in the U.S. is increasingly baroque. Utah recently reinstated the firing squad for execution when lethal injection compounds are unavailable. Oklahoma has approved capital punishment by nitrogen gas asphyxiation as its second line method of execution, after lethal injection, and before electrocution and the firing squad.

Capital punishment in the U.S. is also mired in concerns about states’ data collection. States that have adopted the Common Rule and collect data on the effects of execution drugs on death row inmates (prisoners are members of a categorically vulnerable population and require additional protections when they are subjects of research) must arguably receive oversight from an IRB and comply with other stipulations of the Common Rule. Otherwise, states’ data collection about lethal injection may constitute illegal human subjects research.

Rats Have Empathy, But What About the Scientists Who Experiment on Them?

Lab rats on a scientists’ gloved hand.

Decades of experiments have shown that rats are smart individuals that feel pain and pleasure, care about one another, can read others’ emotions, and will help unfamiliar rats even at a cost to themselves. It’s time to apply what we’ve learned from these animals and stop conducting experiments on them in laboratories.

Recently, there was substantial media coverage of experiments at Japan’s Kwansei Gakuin University demonstrating that rats will help other rats in need and even prioritize helping others over receiving a tasty reward.

The experimenters placed one rat in a water-filled tank, a situation that terrifies rats and from which they try desperately to escape to avoid drowning. A second rat on a platform had to figure out how to push open a door to help the drowning rat reach a dry area. The experimenters observed that rats quickly learned to open the door to rescue their cagemates. When given the choice between opening one door to save a drowning rat and opening another door to secure a chocolate treat, the platform rats helped the distressed rat first – and then shared the treat with the rescued rat. Rats who had themselves previously been thrown into the water tank were faster at opening the door to help their panicked cohorts.

This study is only the latest in a string of experiments that demonstrate that rats show sympathy for pain and distress experienced by other rats and take action to help them.

Unfortunately, many experimenters miss the forest for the trees, writes Alka Chandna, a senior laboratory oversight specialist for People for the Ethical Treatment of Animals (PETA) in Bioethics Forum. Instead of following this evidence to its logical conclusion that millions of rats shouldn’t be confined, burned, shocked, infected, and crippled in laboratories – or should at least receive some basic protections under the law – many use it as the basis for even more experiments. At least one such experimenter recently acknowledged the inherent conflict: “The more we do experiments like this, the more we wonder if we should do experiments like this.”

When Words Matter: Medical Education and the Care of Transgender Patients

A recruiting poster for Australian nurses from World War I.

I was only there to learn how to place IV lines. But as my anesthesia attending and I gathered our needles, tourniquet, and gauze, I noticed that our patient, whom I’ll call Jamie, didn’t appear to fit into a narrowly defined version of gender, writes Colleen Farrell, a fourth year medical student at Harvard, in Bioethics Forum. I wasn’t sure whether to refer to Jamie as she, he, or some other alternative, but imagined it could be quite hurtful if I used the wrong pronoun. I wanted to eliminate that potential for harm.

When it comes to caring for patients like Jamie, in my experience, avenues for improving medical students’ communication skills seem to be lacking. While many communication skills are transferable from one scenario to another, there are also unique issues that arise in caring for transgender patients. My medical school had in fact attempted to teach me how to handle situations like my encounter with Jamie in a lecture on asking patients questions about sexual orientation and gender identity. But real life medical encounters are almost always more complex than the versions presented in a lecture hall.

To address the needs of transgender and gender nonconforming patients, we need physician-mentors experienced in transgender patient care who can help us work through our uncertainty. We need opportunities to gain experience and comfort, through elective rotations in specific LGBT health centers or through simulated encounters with patient-actors. And we need an institutional culture that says loudly and clearly: it’s important to do this well.

The Physician, the Bioethicist, and the LGBT Community

As a discipline, medical ethics has a long history grappling with questions that grow out of clinical encounters. It asks, for example, “What is expected of a physician in regard to confidentiality and relationships with patients?” By contrast, bioethics emerged in the wake of questions with a distinctly social component to them. It asks, for example, “Who should make decisions about scarce life-saving resources, and how?” In making this kind of shift, bioethics can take account of the contextual features that shape theories of health and disease, professional standards in healthcare, and research agendas. This shift has proved important for the lives and welfare of lesbian, gay, bisexual, and transgender people.  LGBT people are and are not like everyone else. We are not like everyone else in matters of sexuality and gender; we are like everyone else in matters of moral standing. The task ahead for bioethics is to interpret those differences across the breadth of biomedicine, without compromise of moral equality.

Timothy F. Murphy is Professor of Philosophy in the Biomedical Sciences at the University of Illinois College of Medicine at Chicago and Bioethics and Developing World Bioethics contributor

Read Timothy’s expanded research on this topic in Bioethics, available in early view and free for readers throughout LGBT Pride Month.

Special Collection: Philosophy of Ethics in Health Care—Read Select Articles Free

Nurses, doctors, and physicians, our every-day heroes of the the medical profession, grapple with the delicate balance of philosophy and ethics as a practitioner.  To them, the philosophical debates of medical ethics is actualized throughout their jobs on an actionable level.  In celebration of its 20th anniversary, The Journal of Evaluation in Clinical Practice has compiled a special issue on the philosophy of ethics. The issue offers a variety of articles on the topic of philosophy and ethics in healthcare, with focuses from evidence-based medicine to person-centred care.

Special Issue at a Glance:

Borrowed philosophy: bedside physicalism and the need for a sui generis metaphysic of medicine

How evidence-based medicine is failing due to biased trials and selective publication

Getting personal: can systems medicine integrate scientific and humanistic conceptions of the patient?

For every complex problem, there is an answer that is clear, simple and wrong

Philosophy, medicine and health care – where we have come from and where we are going

Wiley has an array of journals dedicated to bioethics and medical ethics that explore the crucial scholarly work surrounding the philosophy of ethics within health care.  Also free until May 22nd, an additional collection of resources on the topic includes three of the top 10 journals by impact factor for medical ethics, Developing World Bioethics, Bioethics, and The Hastings Center Report.  Special Collection in Medical Ethics is freely available until May 22, 2015.  Read Here.