[Editor’s Note: Françoise Baylis is University Research Professor at Dalhousie University. She is a member of the Order of Canada and the Order of Nova Scotia, as well as a fellow of the Royal Society of Canada and of the Canadian Academy of Health Sciences. Baylis was one of the organizers of, and a key participant in, the 2015 International Summit on Human Gene Editing. She is a member of the WHO expert advisory committee on Developing global standards for governance and oversight of Human Genome editing. She is the author of Altered Inheritance: CRISPR and the Ethics of Human Genome Editing. She spoke to Charles Camosy.]

Camosy: Especially with the publication of your new book Altered Inheritance from Harvard University Press, you’re one of the most important experts in the world on the ethical implications of CRISPR genome editing. But for those who aren’t familiar with the basics of this technology, can you give a quick explainer on how it works and how it is currently being used in humans?

Baylis: Genome editing involves making genetic changes to the DNA (the genetic code) of living organisms. These changes can involve removing, adding or altering genetic material. The term ‘editing’ usefully describes the work of ‘cutting and pasting’ or ‘finding and replacing’. A problem with this metaphor, however, is that it suggests far more precision than is currently possible.

The most recent genome editing technology is CRISPR/Cas 9. CRISPR (pronounced crisper) is the acronym for ‘clustered regularly interspaced short palindromic repeats.’ This genome editing system consists of two key molecules – a single-strand RNA called a guide RNA (known as the CRISPR), and an enzyme called Cas9 (often described as molecular scissors). The guide RNA takes the Cas9 enzyme to a place in the DNA where the Cas9—the molecular scissors—will make a double stranded cut so that a genetic modification can be made. This genome editing system is commonly described as more accurate, more efficient, and less costly than previous genome editing technologies.

Genome editing can be used to make genetic changes to the DNA of our somatic cells or our germ cells. Somatic cells are all of our body cells, except our reproductive cells. Germ cells are our reproductive cells (sperm and eggs, and their precursor cells) and early-stage embryos. Changes to somatic cells are not passed on to subsequent generations whereas changes to germ cells are passed on to subsequent generations. In China, in October 2018, twins Lulu and Nana (pseudonyms) were born following embryo editing to provide resistance to a type of HIV. This effort by Chinese scientist Jiankui He has been widely condemned as unethical and reckless.

Knocking out or editing genes that cause disease in human beings is one thing — but, as you point out, this raises important ethical questions. Like what counts as a disease at all, who gets to decide what counts as a disease, and what understanding of the good is used in making such decisions. There is also an important question about whether this technology is likely to exacerbate the radical inequality we already have. Can you say more about these concerns?

Not only can human genome editing be done in two different kinds of cells, it can also be used for two different purposes – health-related (therapeutic) purposes and non-health-related (enhancement) purposes. There is, for example, the hope of using human genome editing to treat blood disorders, lung diseases, muscle wasting disorders, cancers, and so on. Beyond this, some hope to use genome editing to make cosmetic changes, to improve cognitive abilities or to promote athletic prowess. For many, non-health-related interventions are ethically controversial.

Françoise Baylis. (Credit: Courtesy to Crux.)

An important worry with heritable human genome editing (where genetic changes are made to subsequent generations) is the ever-widening gap between the haves and the have nots. It is widely assumed that the average person will not be able to afford this technology. Meanwhile, wealthy and powerful elites will be able to use this technology to inscribe their privilege in their DNA.

To be sure, this is not a new worry. Many years ago, Lee Silver wrote a book called Remaking Eden in which he described a future world populated by Naturals (people with unmodified genomes) and the “GenRich” (people with modified/improved genomes). He imagined increased discrimination, stigmatization and marginalization as a result of increasing intolerance for diversity—with ‘difference’ considered as ‘disability.’

This past summer, Denis Rebrikov, a Russian scientist, announced plans to use genome editing technology to prevent a type of hereditary deafness. This announcement raised serious concerns among members of the deaf community for whom it is irresponsible to proceed with heritable genome editing for “a condition that at least some affected people consider to be not a ‘serious condition’, but just a normal variation of human being.”

Metaphorically speaking the human genome belongs to all of us. In my view, we should all have a say as to whether it should be modified and, if so, to what end. In support of this goal, many of us have called for a moratorium to provide time for careful consideration of the ethical issues. Others object to this idea and, most especially, they object to the m-word.

But inserting desired genes — sometimes called genetic enhancement — is something else, right? How likely is that to come about in the near-to-medium term? What different kinds of ethical issues does this raise?

In my own work, I write about health-related and non-health-related interventions. I try to avoid the common rhetoric about therapy and enhancement where it is often assumed that therapy is good, and enhancement is bad. I, along with many others, believe that there is no robust moral demarcation line between therapy and enhancement.

Imagine a future ‘wildly hypothetical’ (possibly improbable) world in which it is possible to increase a person’s height by making a few genetic tweaks. Now imagine a young American boy whose estimated adult height is about 5’2”. His parents are worried that he will experience significant discrimination. They want to use genome editing technology to try to increase his height to the average height for American males, which is close to 5’10”.

Should the parents be able to modify their son’s genome in an effort to protect him from the harms of discrimination? Should the answer to this question depend upon the cause of the short stature? More specifically, should access to future genome editing depend upon whether the boy will be short because of a genetic condition that is widely recognized as a genetic illness or because his parents are short and so he is expected to be “naturally” short? From a different perspective, what if the parents want their child, who is a skilled junior basketball player, to join the Olympic team and for this reason they want to increase their child’s height to 7’ not 5’10”. Should it matter if the desired genetic modification is to gain a competitive advantage as compared with promoting health and well-being?

Many Catholics, as you may know, will argue that this is a flawed process from its foundational moral assumptions because it has turned procreation into re-production–engaging in the kind of “thingification” that should be reserved for producing products sold in a marketplace and used as a mere means to something else’s end. The creation and development of human beings, by contrast, should be guided by moral principles which sees human life as a gift, good for its own sake, quite apart from quality control over a product. Do you think this concern could be shared by those who don’t share the theological presuppositions behind it?

Many people (including Catholics) object to research involving human embryos as this typically results in the death of embryos. People who object to embryo research will object to all germline genome editing irrespective of the research goal.

From another perspective, many people (including Catholics) are worried about the ways in which various reproductive and genetic technologies (including germline genome editing) encourage the commodification of children. They worry about the ways in which children are coming to be perceived and treated as products that are to be judged as more or less perfect in relation to parental or societal ideals. There is, for example, the increasing use of prenatal and pre-implantation genetic testing to select for or against the birth of children with desirable or undesirable traits. With heritable human genome editing, prospective parents would not only be able to select among available traits, they would also be able to design desirable traits.

In addition to worries about the “thingification” of children there are also worries about the “geneification” of children. Here there are two things to consider. First, there is the tendency to reduce children to their genes (and to seemingly forget all that we know about the importance of gene-environment interaction). Second, there is the reification of the gene by those who insist that it is critically important for children to be genetically related to their parents.

In discussion and debate about the “need” for heritable genome editing, some have argued that prospective parents whose future children are at risk of inheriting a serious genetic disorder have a “compelling medical need” and should have access to heritable genome editing technology. Others object that there are reasonable, alternative (less risky and less costly) ways of having healthy children and as such there is no “compelling medical need” for this technology.

For example, the prospective parent could adopt children or use IVF with donor gametes or embryos. In response, the proponents of heritable genome editing highlight the fact that these children would not be genetically related to their parents and that genetic-relatedness is a “compelling medical need”.

In my view, children are so much more than their genes. Moreover, meaningful, rewarding parent-child relationships should not depend upon genetic ties.

One central claim of your book is that we should not move forward without broad societal consensus from people with different interests and diverse perspectives. This seems right, especially given how high the moral stakes are with use of this technology, but it also seems to have at least two challenges. First, the chances of getting worldwide consensus on this and effectively regulating it worldwide — especially given what we’ve already seen in China and Russia–may be close to zero. Second, isn’t it also highly unlikely that — given the radical moral diversity even in countries like Canada and the United States — we will arrive at the kind of consensus you suggest we would need?

In April 2015, a research team in China led by Junjiu Huang published an article in the journal Protein & Cell summarizing their genome editing research involving non-viable human embryos. Non-viable embryos are defective embryos that are not capable of ongoing development. This research raised a number of ethical concerns and, in December 2015, an International Summit on Human Gene Editing was held in Washington DC. I was a member of the Organizing Committee for this Summit.

At the end of this three-day meeting, our committee issued a formal closing statement. In that statement we stipulated that heritable human genome editing should not proceed until there was evidence of safety and efficacy and broad societal consensus. In my new book Altered Inheritance: CRISPR and the Ethics of Human Genome Editing I explain and defend the notion of broad societal consensus. I insist that we need to find “common cause” with our fellow humans in pursuit of the common good.

A commitment to pursue broad societal consensus is a commitment to engage in a certain kind of conversation with a view to better understanding the different values, goals and objectives in play, in the hope of reaching agreement on how best to proceed. My understanding of decision-making by consensus is inspired and informed by the work of women activists who in 1983 were camped out near the Seneca Army Depot to protest the deployment of Cruise and Pershing II nuclear missiles to Europe. The protesters wanted a collaborative decision-making process and developed a plan for decision-making by consensus. The agreed upon process described a commitment to the following principles:

Responsibility: Participants are responsible for voicing their opinions, participating in the discussion, and actively implementing the agreement.

Self-discipline: Blocking consensus should only be done for principled objections. Object clearly, to the point, and without putdowns or speeches. Participate in finding an alternative solution. 

Respect: Respect others and trust them to make responsible input.

Cooperation: Look for areas of agreement and common ground and build on them. Avoid competitive, right/wrong, win/lose thinking.

Struggle: Use clear means of disagreement – no putdowns. Use disagreements and arguments to learn, grow and change. Work hard to build unity in the group, but not at the expense of the individual who are its members.

The commitment to these principles is about unity, not unanimity. The goal is to ensure that everyone believes that their concerns have been heard and taken into consideration. In the words of the Seneca Women:

Consensus does not mean that everyone thinks that the decision made is necessarily the best one possible, or even that they are sure it will work. What it does mean is that in coming to that decision no one felt that her position on the matter was misunderstood or that it wasn’t given a proper hearing. Hopefully, everyone will think it is the best decision; this often happens because, when it works, collective intelligence does come up with better solutions than could individuals.

The point here, as concerns the hoped for efforts at developing broad societal consensus on human genome editing, is that working towards this goal will ensure a better outcome than would be the case without this effort if for no other reason that the process (involving respectful engagement) will mean that a wider range of interests and concerns will have been taken into consideration than would otherwise have been the case.

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