In Judaism we are taught that life is sacred and therefore, illness and disease are to be fought with a vengeance. But what if we were successful in eradicating disease? What would that mean for our humanity? This was the very question we sought to explore at Congregation Emanu El in Houston one morning in October, when we assembled a group of physicians and scientists and an ethicist – I was the ethicist.
Historically, technologies are introduced before we are fully able to grapple with their implications. For example, we now have the ability to map our genomes – those codes of information that, among many things, predetermine our susceptibility to certain (genetic) diseases. For a mere $199, I can learn whether I am at risk for late-onset Alzheimer’s disease, a terrible and incurable illness. I recently asked a group of physicians whether they would want to know this information, and the ensuring conversation was illustrative: while a small minority wanted this information to help guide their lives and afford them the opportunity to make lifestyle changes, the vast majority shared that there were more risks than benefits to having this knowledge.
Moreover, when an individual elects to learn whether they are susceptible to any given disease, this decision may also impact their siblings and offspring, who were probably not consulted in the first place. Thus, what seems like a very personal decision (to have the test) has significant implications for others.
I encouraged the physicians to think about how best to counsel their patients who will be asking for their advice. Thus, while testing may be beneficial for one patient, it may cause another significant distress.
This same $199 test can also reveal whether I have the BRCA gene, which makes me susceptible to breast and ovarian cancer. In this instance, the discussion takes an interesting turn since there are procedures that can mitigate one’s chances of getting the disease. However, what obligation do we have to share the results? Will our siblings and offspring welcome this information? Taking it one step further, after learning about my susceptibility, do I even want offspring if there’s a high likelihood of passing a disease on to them?
This discussion is complicated by CRISPR/Cas9, a method that, in short, may allow us to replace defective genes, thereby eradicating that gene-linked disease. Thus, the BRCA gene, which predisposes me to breast cancer, can be “cut out” and replaced and voila, I’m all but assured that I won’t develop breast cancer because of this genetic mutation. Take this one step further, and the genetic disease can be “cut out” of a fertilized embryo, thereby eradicating the disease in future generations.
Imagine a world that is able to stomp out diseases such as Tay-Sachs, Sickle Cell and Huntington’s, to name a few. After all, isn’t the purpose of medicine to cure diseases and if the technology is available, don’t we have a moral obligation to use it?
My job is to explore the ethical challenges of these technologies. I break these challenges into four large areas: defining the disease, risk assessment, access, and downstream concerns.
First, how do we go about defining which diseases to tackle with this technology? Should we start with those that cause the most suffering (and by whose definition) and death, or diseases that impact the most people? What about ailments that contain and identity and culture for those who have them, such as autism spectrum disorder or deafness – are these diseases, or differences? There has to be some consensus from a broad set of stakeholders to help us answer these big questions.
The second issue has to do with acceptable risk. Currently, we don’t know all of the risks associated with CRISPR/Cas9, but suffice to say, its ability to “cure” is enticing. As humans we are pretty terrible at estimating the risk of any given intervention because we are programmed to look at the benefits. Moreover, as a society, how are we to quantify which risks are acceptable and which aren’t? This is further complicated when you delve into gene editing, because you may be passing these risks on to your offspring. Furthermore, these consequences may not manifest themselves for many generations.
A third concern has to do with access; which patients will be able to financially afford the technology? Like so many other medical advances, those with means have access, and those without will continue to suffer with the disease. The most recent example of an access crisis was the launch of two drugs that cure Hepatitis C, Harvoni and Sovaldi. At a price of $94,000 and $84,000 respectively, only patients with private insurance had ready access to this lifesaving drug. Medicaid, the state/federal program for low income households, had to ration the drug, otherwise it would have gone bankrupt. Thus, we need to mindfully think about who should have access and at what cost.
Concerns flowing from these three areas require a thorough analysis and thoughtful discourse. For example, in discussing which diseases to eradicate, we must also think about resources for those who are still born with the disease. If the intent is to eradicate, what happens if you aren’t completely successful? Further, what should our stance be if a family decides against using the technology? Will our society shun them? Should medical technologies such as CRISPR/Cas9 be thought of as a public good, rather than a revenue generating mechanism? Lastly, if new technologies can eradicate disease, what does that mean for our humanity?
I recently learned from Rabbi Oren Hayon‘s Sukkot sermon that Ecclesiastes grappled with these questions long before there was any technology to consider. In short, disease is a part of life and as such, we should not obsess on trying to eradicate it, but instead, focus on living the lives we have inherited. Unfortunately, as humans, we are wired to solve problems, but in doing so, we need to consider some very fundamental questions including what would eradicating a disease mean to society.
(This post is part of Sinai and Synapses’ project Scientists in Synagogues, a grass-roots program to offer Jews opportunities to explore the most interesting and pressing questions surrounding Judaism and science. Rebecca Lunstroth, JD, MA, is Assistant Professor of Family Medicine and Associate Director of the McGovern Center for Humanities & Ethics at the University of Texas at Houston, and is also a congregation member at Congregation Emanu-El in Houston, TX).