Talks
Bioethics Interactive Quiz & Bioethics Discussion
Friday June 24, 11:25, Lobby NLG
Effy Vayena, Deputy head of Institute of Translational Medicine; Professor of Bioethics at the Swiss Federal Institute of Technology in Zurich (ETH Zurich)
Jeff Kahn, Andreas C. Dracopoulos Director of the Johns Hopkins Berman Institute of Bioethics; Robert Henry Levi and Ryda Hecht Levi Professor of Bioethics and Public Policy
Jeremy Sugarman, Deputy Director for Medicine, Johns Hopkins Berman Institute of Bioethics; Harvey M. Meyerhoff Professor of Bioethics and Medicine in the Department of Medicine and the Berman Institute of Bioethics at the Johns Hopkins University
Sharon Kaur, Senior Lecturer, University of Malaya Faculty of Law
An interactive quiz where the audience answered three questions about bioethics dilemmas prompted a very interesting discussion. Jeff Kahn, Jeremy Sugarman, and Sharon Kaur, with the help of moderator Efi Vagena, parsed the public's answers and the new questions that these answers created from a scientific perspective.
Question 1: Would you participate in a clinical trial for a new vaccine?
Yes: 40
No: 60
Starting from the answers to the first question, Efi Vagena asked Jeremy Sugarman to comment and explain what these vaccine trials are.
Sugarman noted that this is not a question of bioethics, and the answers relate to a simple question. The question is what participants had in mind when they answered, what kind of trial they imagined it to be. For any trial, you first develop the vaccine in the lab, regardless of what technology you use, then you test on animal models, and only then does the human testing phase begin. The first phase, phase A, concerns safety and is conducted in a very small number of people; in the second phase, it is tested on more people and you can see if the antibodies you expect are created and if there is an immune response. In the third phase, which is much larger scale, we use randomization, that is, some randomly selected people receive the experimental vaccine and others a placebo. At this stage, we want to see the comparative results in relation to the outcome and what this is. For example, will you get infected sometimes, how badly will you get it, will someone have antibodies, or not even get it? So when you answer this question, you have to think about exactly what phase of the study we are talking about.
Sugarman's answer gave Vagena the opportunity to ask Kahn what people should know about these phases when they are invited to participate.
Responding to this question, Kahn noted that they were now touching upon a bioethical issue. In order to be able to give an answer, we need to know certain other data. He also pointed out that research on humans has some requirements, most importantly, that some people should be willing to be exposed to risks in the hope that there may be a benefit and that they will contribute to gathering information that will help society. Participation should therefore be voluntary. In conclusion, we must keep them well informed and make sure they understand all the details of each phase and secure their informed consent regarding what their participation may mean.
Picking up the the threads from the previous answers, Vagena addressed Kaur, asking her if she sees any major ethical problems with the processes.
Initially, Kaur said she was shocked by the public's responses, as even she, who works in this field, does not know what answer she would give—perhaps her answer would depend on the type of trials—but in any case she expected that the majority of the audience at a health conference would want to participate. From a global health point of view, however, we should not be concerned by these issues, as the protocols for and evaluations of clinical trials are an ongoing process all over the world, so the risk factor should not concern us.
On the basis of what the previous speakers had said, Vagena wanted to hear Sugarman's opinion on how we can come to the decision to take this "safe risk."
Sugarman began his answer with a question: “When someone is called upon to be exposed to risk for the benefit of society, are they ready to do so?” Scientists, doctors and researchers are enthusiastic about what they are aiming to discover, but that does not mean that the whole world should be. There are ethics and bioethics committees that control the scientific and bioethical data. They have to check if there is a small risk for great benefit. While the research is in progress, there are independent external committees that look at the data and judge whether the trial should be continued.
The pandemic was obviously a hot topic in the discussion, with Vagena asking about the rumours that someone had deliberately infected people. Is it ethical to infect the world with a virus we know nothing about?
Kahn wondered why someone would want to do this. Under controlled conditions, we could know if a vaccine was effective. From an ethical point of view, can we conduct such a trial? Following the dictates of ethics, we could have someone exposed, but we have to have the treatment to administer immediately. This was the case when the malaria vaccine was being developed, where some people consented to be bitten by an infected mosquito, but there was a treatment to protect them. A second case he mentioned is that of self-limiting diseases where, while you get sick, you get better on your own, or with minimal medical help. In the case of COVID, neither was true, but the answer depends on each country's bioethics committees.
At this point in the discussion, Kaur wondered, “What if I want to take that risk, why would they stop me, what's the bioethical argument for this?”
Sugarman stressed that we need to have robust scientific data, and we don’t know if the risk will yield good data. With COVID, we did not know if we could infect someone even with a weakened virus. However, he noted that at first he could not understand people’s enthusiasm for participating in trials. In any case, he considers that giving the public thorough information is a key factor.
The second question: Would you use a chatbot for mental health services?
Yes: 49
No: 51
Given that there are 20,000 mobile phone apps related to mental health and that there are chatbots that support people with mental health problems, Vagena asked Kaur to explain how they work.
Kaur said that chatbots are programs designed to interact with people; they mimic human conversations in order to communicate with humans. Based on the literature, they are effective and are used in mental health education, in treatment, and they are useful in diagnosis. They were very helpful in diagnosing post-traumatic stress amongst American war veterans, as soldiers felt more comfortable talking to a computer than to a human. How good it is depends on the training you have provided for the algorithm and the artificial intelligence. Not enough research on safety has been conducted; they do entail various risks, but we can have expectations and they seem to be very useful in areas of the planet where, for example, not many doctors exist.
Kaur's explanation prompted Vagena to ask about the ethical challenges.
Kahn took the floor and stressed that people need to understand that they are talking to a machine and not a person. We need to clarify the situation in which this is useful. There are times when they are useful—if you're lonely you can talk to a chatbot, but what about if you are suicidal? Is communication with a bot effective? There are also questions regarding the collection and storage of answer data by a company that essentially uses your information, without actually offering you anything.
Vagena wondered, where a bot substitutes for a doctor, how can there be a therapeutic relationship between the doctor and the patient?
Sugarman took the floor and said that human relationships are very important; you trust your doctor with your personal data. Of course there are those who feel stigmatized if they talk about mental or sexual health, so, when they are safe and effective, using some tools that facilitate conversation is very useful.
The discussion on the bots prompted Vagena to ask another key question: If a bot or an algorithm makes a decision, who takes responsibility? Who will be accountable?
Kaur replied that it's hard to find the chain, from the programmer to the error. It’s like getting into a black box, and we just have to follow the sequence of who writes the code and if the code is problematic and so on, just sue everybody.
The third question: If a DNA test could tell you that you would develop an incurable disease, would you want to know?
Yes: 60
No: 40
Vagena asked Kahn if he could talk about genetics.
The first thing Kahn pointed out was that doing a DNA test is very easy. However, the question is still very general because it does not necessarily mean that if you have a specific genome that we know will lead to a disease that we know when you will die from this disease. If it's something that's going to kill me in two weeks, he said, I want to know, but if it affects me in 40 years, I might not want to know. To give an answer to this question, we get not only a person’s DNA, but also that of their relatives. The technology exists, it’s just that there are not so many diseases that we could detect with a DNA test.
Based on what Kahn said, our genetics connects us to our relatives, meaning that this information is not only mine because it has implications for others. What are the ethical challenges in this, that is, if I have the answer to this question, what does this mean for my relatives? asked Vagena.
In her answer, Kaur linked this to one’s duty to family and society, as it can change the life of more than just one person (e.g. to have children knowing that they or their children may inherit a disease). It is very difficult to make such a decision.
Vagena addressed a follow-up question to Sugarman, asking if whether I want to know should play a role in any decision.
In his answer, Sugarman noted that it depends, as before you take the test you must understand why you are doing it and what we will do with the results, it is also not certain that a test will give you a clear answer. Scientific evidence only confirms specific tests, in combination with specific diseases. What does it mean for an individual's family? For example, if you learn that your father is not your biological father after all, will you be happy about it or not? There are many things to consider in this context. We should definitely know from the start what someone wants to learn from this test.
Concluding, all three panellists agreed that the public should be involved in the debate on these issues, because it is through such discussion that things can and will get better.