Genetics and Ethics Book (... in the final stretch!)

I am working on the final chapter of my forthcoming textbook titled Genetics and Ethics for Polity Press. It is expected to be published in 2018 and I have cleared my summer schedule to ensure I have time to make the final revisions to make this book so it will be as up-to-date and relevant as possible. Here is the substantive blurb I sent the publishers which gives you an overview of the topics covered and conclusions reached in the book:

Advances in the biomedical sciences, especially our understanding of the role genes play in health, disease, happiness and human behaviour, might help societies advance important moral aspirations. These aspirations range from preventing and treating specific diseases, to realizing greater equality of opportunity, expanding the scope of reproductive freedom and the promotion of the healthy aging of a population. New technological advancements, like genetic screening and testing, gene therapy and genome editing raise a host of ethical questions. Is the idea of “genetically engineering” humans a morally objectionable form of “eugenics”? Would it be ethical to alter the rate of human aging if doing so would increase the number of years humans can expect to live on a warming planet with a global population already exceeding 7 billion people? Should parents undergoing IVF be permitted to screen for the sex of their offspring? What plays a more important role in human health and happiness, heredity or environment? And how does the answer to latter question influence what we consider morally sound science policy to be in the twenty-first century? These and other pressing societal concerns are addressed in Genetics and Ethics.

The book is designed to help students and scholars in the humanities and life sciences think rationally and cogently about the ethical and social challenges raised by the genetic revolution. Some philosophers have urged caution about expanding the domain of human control to include directly influencing the “genetic lottery of life”. Michael Sandel, for example, has argued that the quest to perfect our biology threatens to erode our appreciation for life as a gift. While Jürgen Habermas has defended the position that parents selecting the genetic constitutions of their offspring threaten the self-understanding of the affected person as an autonomous and responsible agent. Other authors make the idea of “normal species functioning” a central focus of their normative analysis of the demands of genetics and justice. In From Chance to Choice: Genetics and Justice, Allen Buchanan, Dan Brock, Norman Daniels and Daniel Wikler conclude that there is a principled presumption that genetic intervention to prevent or ameliorate serious limitations on opportunity due to disease is a requirement of justice. And finally the bioethicist Julian Savulescu has gone so far as to endorse what he calls the “principle of procreative beneficence” which maintains that couples should select the child who is expected to have the best life based on the relevant information, including genetic information.

Farrelly proposes we pause and hit the “reset” button on the ethical debates about genetics and genetic engineering. The ethical analysis developed in this textbook is not deferential to “normal species functioning” or the therapy/enhancement distinction. Nor does it address the ethics of procreative decisions in a fashion that ignores the different burdens that may be placed on women vs men. And finally, the ethical analysis advanced in the book does not treat genetic interventions as one monolithic type of intervention. Like different types of social engineering (e.g. patriarchy, capitalism, democracy, education, etc.), genetic engineering could be both good or bad. The devil is really in the details. So rather than develop an ethical analysis of genetics that prioritizes one particular value or moral ideal to guide our deliberations about the prospect of genetically engineering humans, Farrelly advances instead a provisional moral analysis. He contends that public discourse and debate should be informed by important empirical insights concerning the role heredity plays in different traits, as well as the risks, benefits and costs of genetic intervention to individuals and societies vs the risks, benefits and costs of the “biological status quo” yielded by the blind process of evolution by natural selection.

The chapters of the book address issues as varied as eugenics, infectious and chronic disease, evolutionary biology, epigenetics, happiness, reproductive freedom and longevity. The book emphasizes why the virtue ethics tradition is particularly helpful to address the complexity of ethical and social issues raised by advances in our understanding of human genetics. The virtuous polity, argues Farrelly, is one that aspires to ensure that both individuals and populations can flourish. By integrating an account of the moral virtues of benevolence and justice with the epistemic or intellectual virtues- the ability to recognise the salient facts and have a sensitivity to details, intellectual humility, adaptability of intellect and the detective’s virtues- Farrelly helps illuminate some of the ethical challenges raised by the genetic revolution. This distinctive methodology of the book, coupled with the timeliness of its applied focus, should appeal to both philosophers and those interested in advances in the biomedical sciences more generally.

An empirically-informed virtue ethics analysis of genetics and ethics, concludes Farrelly, yields five general, substantive moral convictions. Firstly, a virtuous polity would see genetic intervention, whether it be gene therapy, genome editing or a drug that modulates the expression of specific genes, as a possible extension of the duty to aid provided such interventions prove to be reasonably safe and cost-effective ways of preventing or treating morbidity. Secondly, virtuous agents would avoid the folly of both genetic determinism and environmental determinism. Thirdly, a virtuous polity would not necessarily eschew eugenics, where that term is taken to mean, as Bertrand Russell (1934) defines it, as “the attempt to improve the biological character of a breed by deliberate methods adopted to that end”. Eugenic aspirations can be morally defensible, even morally obligatory, when they pursue empirically sound and morally justified aims (e.g. promotion of health) through reasonable and morally justified means that treat all persons as free and equal moral agents. Fourthly, a virtuous polity would take a purposeful approach to determining the scope and limitations of reproductive and parental freedom. Such an approach will give due consideration to three different moral values (without ascribing a primacy to any one of these values)- autonomy, wellbeing and equality. And finally, a virtuous polity would aspire to promote the healthy aging of its population, including pursuing interventions that retard the aging process if doing so increases the healthspan or “biological warranty period” of humans. Any such aging intervention should be pursued in a responsible manner so that considerations of equity, population size, intergenerational justice and environmental impact are also taken seriously.

Three-Parent Baby

NatureNews reports on the genetic details of the first child created from the DNA of three parents. The study is here.

The January issue of Bioethics has a special issue devoted to this topic.

Cheers,
Colin

"Natural" vs "Normal" with Gene Therapy/Enhancement

The National Academy of Sciences has published an extensive document on the ethics and governance of genome editing (see here). This is very timely for me as I am in the process of writing, and I hope completing in the next few months, a textbook on this general topic.

In the chapter dealing with genetic enhancement there is a brief discussion of the conflation of describing particular genetic mutations or constitutions as "natural" with the sentiment that they must therefore be "positive" and "beneficial". This conflation typically occurs when people object to genetic manipulation on the grounds that it is "playing god". The report helpfully explains the problem with this stance:


The word “natural” has similarly taken on a positive connotation reflecting a common view
that nature produces things that are healthier and generally better than anything artificial—this
despite evidence demonstrating that “natural” things can be either safe or intrinsically dangerous.
In the present context, genetic variants that exist in nature may either support health or cause
disease, and the human population contains multiple variants of most genes (see Chapter 4).
Thus, there is no single “normal” human genome sequence; rather, there are multiple variant
human genomic sequences (IGSR, 2016), all of which occur in the worldwide human gene pool
and, in that sense, are “natural,” and all of which can be either advantageous or disadvantageous. (p. 106)

Given evolution by natural selection has given us genes, and genomes, for both health and disease, the question is whether humans ought to purposefully intervene in the genetic lottery of life to bring about a more desirable outcome than that conferred by the arbitrary process of evolution by natural selection. As the prospect of successful human intervention increases, so too, I believe, does the moral imperative to intervene to improve our biology beyond the confines of what evolution by natural selection has provided.

Cheers,
Colin

CFRC interview on the Genetic Revolution

Last week I gave a 40 minute interview for the Right of Reply Show on CFRC. The interview starts around 6 minutes into the link below and covers genetic intervention, aging and justice.


Interview here.


Cheers,
Colin

Book Launch this week!

My department has kindly organized a book launch for Biologically Modified Justice, which takes place Tuesday at Queen's this week. Details are in the attached poster.

Trying to summarize 15 years of research and argument in 30 minutes is proving a challenge for me. Perhaps I can succinctly capture Part 1 of the book by breaking it down into the good news and the bad news.

The good news is humanity has escaped the "Young World", a world dominated by early-life mortality caused by extrinsic risk factors (e.g. infectious disease, poverty, war, etc.). The bad news is the "Aged World" is one of unprecedented levels of chronic disease and suffering, a problem that will continue to get worse unless we successfully increase the biological warranty period of humans.

One major goal of the book is to canvass how the transition from the Young to the Aged world requires a major re-think of what the demands of distributive justice are (especially the importance of well-ordered science).

Cheers,
Colin

2016 Year in Review

Blogging has been light for me again in 2016, so I wanted to remedy that with a year in review post and a promise to return to more regular posts in 2017.

Professionally 2016 was a very important year for me as my book Biologically Modified Justice was finally published with Cambridge University Press in June. It will be interesting to see what reaction this book gets from (1) other political theorists (admittedly it is a topic very few theorists are working on, but hopefully that will change!); and (2) scientists working in the fields of genetics and aging.

The ink wasn't even dry on Biologically Modified Justice and I have starting working in earnest on a textbook on genetics and ethics for Polity Press. Unlike the contextual, pluralistic moral analysis developed in Biologically Modified Justice, this new textbook adopts a virtue ethics/epistemological lens. So I have made much more work for myself by adopting a completely different theoretical foundation for this new work. I am hoping to make the final push to complete this textbook over the next 6 months.

I also completed 2 forthcoming book chapters in 2016, one for a volume on Virtue Ethics (my chapter is on virtue epistemology and democracy) and the second for a book on Ethics and the End of Life (my chapters is on justice and life extension).

I also taught a brand new 3rd year undergraduate course at Queen's on "Law and Politics" to 60 undergraduates. The course was a re-designed version of a graduate-level course I originally taught at UCLA when I was a Visiting Professor there in the Dept of Public Policy 3 years ago. This was the first course I taught with chalk and a black board in well over a decade. I really enjoyed it, and am slated to teach it again this coming winter term.

I wish everyone all the best over the holidays, and may 2017 find you in continued good health and high spirits!

Cheers,
Colin

Genetics and Ethics Textbook (Post #2)

In this new textbook I am writing on genetics and ethics I employ a virtue ethics analysis of the issues. One of the early chapters details the limitations of invoking principles for tackling the social consequences of the genetic revolution (or any practical predicament).

Over the course of the next few posts I will detail 4 principles adopted by moral and political philosophers to reveal the potential problems they face in terms of enhancing our exercise of practical reason, especially if one is tempted (as I certainly was when I started thinking and writing about these issues) to apply these principles to guide our thoughts on the prospect of genetic intervention.

(1) Peter Singer, The Principle of Preventing Bad Occurrences
(2) John Rawls, Two Principles of Justice
(3) Robert Nozick, Principle of self-ownership and the slogan: "Liberty Upsets Patterns"
(4) Precautionary Principle

In this particular post I will limit myself to a brief discussion of Singer's principle.

Singer invoked this principle to raise awareness about the problem of global poverty. But one could see how the principle might be employed to mitigate the vulnerabilities of the genetic revolution. Let us re-hash Singer's principle and the famous child drowning case.

The principle of preventing bad occurrences maintains: If it is in our power to prevent something bad from happening, without thereby sacrificing anything of comparable moral importance, we ought, morally, to do it.

Singer asked us to contemplate a now famous thought experiment to demonstrate the normative force of this duty to aid. The example concerns a child who is drowning in a shallow pond. You are walking past the pond and notice the distressed child in need of assistance. The child is not your child, nor is the child a compatriot. They are a citizen from a distant and far away country. Nevertheless, the child is a human being in need of assistance. If the only burden to be incurred by saving the child is getting one’s shoes and trousers wet then there is, argues Singer, a stringent duty to save the child.

Singer then drew an analogy between the example of the drowning child and global poverty. The rich living in the developed world have a stringent moral obligation, he argued, to donate a significant amount of their income to help those living in poverty in distant lands. Singer’s argument spurred much debate on the demands of global justice, a topic largely ignored by philosophers before Singer’s article. Questions like “Do national boundaries have any ethical significance?” are still debated over forty years after Singer’s original article appeared in print.

But invoking the principle of preventing bad occurrences (or a duty to aid) is not, by itself, very helpful in terms of the practical guidance it provides us with. This is not to suggest that appealing to principles has no legitimate role to play in our moral deliberations. Invoking general rules or principles can help us adopt a “bird’s eye perspective” of the moral landscape. However, I believe there are also significant limitations in relying too heavily on moral principles or rules. Most of the bad things in the world, including global poverty, are infinitely more complex and complicated that the example of helping a drowning child in a shallow pond. How do we ensure the actions we undertake to redress poverty actually help others, rather than just wasting our time and energy or, even worse, making the situation even more dire (as can conceivably happen in the case of providing foreign aid)?

The problem of global poverty is not simply, or even primarily, a problem of the rich not donating money to the poor. But it is hard not to form that impression form Singer’s original article. The central moves in Singer’s moral argument are (1) to invoke the principle of bad occurrences, then (2) to link that principle with the badness of poverty, and then (3) to conclude that the solution to this bad is for the rich to donate more money to foreign aid.

Suppose we ran a similar moral analysis to buttress the case for mitigating the genetic lottery of life. Imagine the child in need of assistance was not drowning in a shallow pond. Instead, the source of the threat of the child drowning was internal to her. The child was born with cystic fibrosis (CF), a genetic disorder which impedes the normal functioning of lungs. Left untreated, a child will in effect “drown from within” as the condition fills the lungs with fluid.

In the 1970s a child with CF had a very low life expectancy at birth. Typically a child did not live more than just a few years. However by the 1990s things had improved. The median age of survival for a child born with CF in Canada was nearly 32 years. And that increased to nearly 50 years by 2012. However, a life expectancy of 50 years is still 30 year less than the average in Canada. Inheriting the genes for CF has a profound impact on the life prospects of a person. Dying from CF, like dying from poverty, is a bad thing we should seek to prevent if possible. So why not make the Singerian moves (1) and a modified version of (2) which focuses on the harms of genetic disease, and then conclude that people should be donating all their resources to creating a gene therapy for CF, until the sacrifice risks something of comparable importance to developing CF?

One of the central limitations of invoking the principle of preventing bad occurrences and applying it to one specific form of badness (be it poverty or CF) is that the world has many bad things about it that need to be addressed. So invoking the principle itself doesn’t help us determine how to prioritize among the plurality of problems (i.e. bad occurrences) we need to address, nor does it bring adequate attention to the realities that different kinds of intervention will be more risky, or costly, or effective than other forms of intervention. I believe a shift to the virtue of benevolence and acting from phronesis (practical wisdom) will help remedy these shortcomings. In the next post I will detail some of the problems facing the adoption of the principles in 2-4 to the topic of genetics.

Cheers,
Colin

International Day of Older Persons (2016)

Saturday is the International Day of Older Persons.

The concern for the health and happiness of older persons is something close to both my professional and personal life, so I offer some thoughts on the significance of the this day, invoking the parlance of political philosophy!

My Quick Take on this topic: Justice requires we treat all persons as free and equal citizens, and this duty applies to persons at all stages of the lifespan, including the post-reproductive stage of life.

My Expanded Take: The world has made great (but admittedly uneven) progress in reducing early life mortality. A baby born into the world today has a life expectancy of 71.4 years. This is humanity’s most amazing success story- we have escaped what we can call the “Young World”, a world where most humans died before reaching middle age. Such was the fate of our species for 99.9% of our species’ evolutionary history. Now we have reduced the extrinsic risks of death and disease to a level such that it makes sense to describe the human world as an “Aged Word”. There will be an estimated 2 billion people over the age of 60 by the middle of this century, and life expectancy is projected to rise to age 80 by the end of the century. Our populations are etching closer and closer to the upper limits of the (average) lifespan of approximately 85 years.

This development, while a wonderful success story, also presents enormous challenges for families, health care institutions, basic research on health and the economy. How do we combat the social isolation that many older persons face? How do we fairly manage the caring duties required by aging populations? How should our laws and policies surrounding the end of life be modified? And what can we do to promote healthy aging, so that people can enjoy more health, vitality and independence in late life? I believe these are among the most pressing societal questions facing humanity this century.

So Saturday I am hoping everyone will (1) you reach out to connect with, and express gratitude to, some older persons in their life; and (2) ask yourself what you (and all of us) can do to help make our families, societies and the world a better place for older persons.

Cheers,
Colin