Leila Jamal, ScM, PhD, CGC is the associate program director for the Johns Hopkins/ NIH Genetic Counseling Training Program. Dr. Jamal has extensive background in bioethics, an NIH appointment with the National Cancer Institute (NCI) and collaborates with the NIH Bioethics Department. She has recently published and presented on the pitfalls of a strictly nondirective genetic counseling approach.
Dr. Jamal argues that directiveness and making normative recommendations for patients is not only acceptable but desirable in the genomic era. Recent publications by Dr. Jamal and colleagues at the National Institute of Allergies and Infectious Diseases (NIAID) - (Schupmann et al, 2020 and Jamal et al, 2019) — and her recent plenary session at the NSGC 40th Annual Conference, (“Directiveness” in Modern Genetic Counseling: Navigating Our Shared Future with Values, Evidence, and Versatility), explore a bioethical framework that assists genetic counselors in considering when normative recommendations are appropriate. I had an opportunity to ask Dr. Jamal some questions about her work.
1. What do you feel is the primary importance of these recent publications to the field of genetic counseling?
My hope is that the articles and plenary session will encourage my genetic counseling colleagues to think about ethics in a more sophisticated and nuanced way than our profession has in the past. The points made in Jamal et al, 2019 are not novel, however they are organized in a framework that will be useful to consider in a more multi-dimensional way. Genetic counselors have made surprisingly few contributions to the bioethics literature. I hope that this will change, because we have so much to say. My article is one small step in that direction.
2. As genetic counselors diversify their roles, do you imagine that the application of the ethical framework outlined in Jamal et al, 2019 would extend beyond the clinical scope described in the article?
I am glad that you asked this question. I really wanted to extend the framework to non-clinical work, and especially to policy work, but felt like it was a bridge too far for this small paper. Certainly, many of the same considerations and values apply to our work in programmatic, policy, and commercial roles. However, I think the relational considerations, role-based considerations and familial considerations might be less directly relevant in those contexts. In a policy context, I think of inclusiveness, representation and procedural justice as fundamental elements of an ethical approach. You just gave me an idea for another paper!
3. Do you feel normative recommendations are currently considered more acceptable for a particular genetic counseling specialty compared to others?
In oncology, there is a real need for genetic counselors to make clear and tailored recommendations given the tremendous amount of genomic data that is being shared with patients. My colleagues in cardiac genetics have told me that this paper (Jamal et al, 2019) resonates with them for similar reasons. I think this framework is relevant in any context where inappropriate test ordering occurs or where an overwhelming barrage of options exists. The important thing is that just because we recommend something doesn’t mean the patient has to or should do it. It means that we have an obligation to tell our patients what the evidence says and what outcomes have been for other patients in similar situations. Shared decision-making is still incredibly valuable, even if it results in an outcome that diﬀers from what was recommended. The point is that we should not be shy about asserting our expertise when it is relevant and when it is clearly in a patient’s best interest to do so.
4. How do you see genetic counselors’ relationship with normative recommendations changing in the future (e.g., with the introduction of novel testing technologies)?
I think we will need to be more explicit about the ethical reasoning we use to arrive at conclusions about the acceptable uses of new technologies, whether as individual counselors or collectively as a profession. At the heart of it, that is the conversation I’m trying to start. Most of us support both reproductive choice and disability rights; most of us are optimistic about gene editing and concerned about its misuses. These things might seem like paradoxes. However, if you work through the specifics of any one case, you can start to identify details that strengthen or weaken an ethical argument for or against doing something in a specific circumstance. An ethical framework can help us see those details more clearly.
As our profession diversifies, I suspect that we are going to start disagreeing with each other more frequently. That’s healthy, if we argue with each other constructively. Constructive arguments are more likely to happen if we are on the same page about the values that matter to us as a profession. We might give those values diﬀerent weights, but at least we can all agree about what kinds of things matter in a broad sense. So yes, I hope normative ethics will become a more explicit part of our professional conversations in the future.