NatureNews Piece on Rare Genetic Disorders and Clinical Trials

NatureNews has this interesting piece about the challenges of balancing the requirement for rigorous scientific research with the moral imperative to foster medical innovation. A sample:

We do need rigorous and robust scientific processes,” says Alastair Kent, former director of Genetic Alliance UK, an umbrella body for more than 200 rare-disease patient groups. “But we also need new ways of proving the quality, safety and efficacy of new drugs.” Nick is trying to ensure that the journey will be smoother for others than it has been for him and his family.

....Around the world, regulators are under pressure to speed up the approval of therapies without sacrificing safety and efficacy assessments. Some of these efforts are controversial — a scheme in Japan to approve stem-cell treatments before they are known to work, for example and ‘right to try’ laws in the United States that allow people who are terminally ill to take unlicensed medicines. Nick co-founded another charity in 2012 to help people with rare diseases and their carers advocate for orphan-drug development.

Cheers,
Colin

Back to Teaching!

My Fall term sabbatical is over. And tomorrow I jump straight back into teaching, offering my "Science and Justice" 4th year seminar and the large 2nd year lecture course "An Introduction to Political Theory". Below are the trailers for the two courses, which help get me pumped for the first classes!

Cheers,
Colin

Year in Review 2018

2018 was a busy year for me, both professionally and personally. Career highlights include:

#1. The Publication of Genetic Ethics: An Introduction in October 2018.

#2. A fall term sabbatical as the Fulbright Visiting Research Chair at the University of Hawaii at Manoa.

#3. My paper "Aging, Freedom and Geroscience" was accepted for publication in the journal Rejuvenation Research.

#4. I published a Commentary Reply on gene patents in the American of Journal of Bioethics.

#5. I attended an excellent workshop on happiness at Harvard and am writing up a new chapter for an edited volume from that event.

I have a number of commissioned things to write in 2019, after that I should be able to invest more time in writing more about play and the good life. Happy New Year to all!

Cheers,
Colin

New Year's Resolution: Goodbye to Facebook for (at least) a Year!

As 2018 comes to an end, I will post my usual "year in review" post next week. But today I wanted to share some thoughts on a decision that has been coming for a long time for me.

In 2013 I joined, after contemplating and mulling it over for 6 years!, to join Facebook. The main catalyst for that decision at the time was my eldest son had joined FB a month or so before I did and I wanted to feel connected to him. Also, I was about to head off alone to California for my sabbatical and I wanted to feel connected to family and friends. So I joined FB. I also thought it might help me professionally, keeping me abreast of what scholars in my field and those I had loss touch with were up to.

Over 5 years later I felt it was time to seriously reflect on whether the benefits and costs of FB were worth it for me (I understand that the cost/benefit ratio may look different for others). And I don't think they are. My kids don't use FB, it is too "uncool" for their generation. So it doesn't help connect me with them, which was the main reason I joined in the first place. I do enjoy seeing pictures from my relatives in England. And I like seeing the occasional newsfeed item of a friend I haven't heard from in a while. But the reality is that any benefits I did receive from being on FB where outweighed by the costs. Having the FB app on a phone can be like crack. One can find oneself unconsciously checking their phone while waiting in line at the grocery store, or bored at home, etc. It can become a persistent distraction in one's day-to-day life (I am also seriously contemplating getting rid of my mobile phone which I got at the same time I joined FB, but the phone does really help me stay connected with my kids).

What about the professional benefits of FB? I do enjoy seeing updates from my friends and colleagues. But again, I think the cons outweigh the benefits. I do sometimes learn of new publications, conferences, etc. that are of interest to me that I might not learn about, or hear about as quickly if I am not on FB. But I also think the medium of FB lends itself to trivial information sharing. A shared meme or news item that has many FB friends angry or upset would be fine to learn about say once a month. But a daily barrage of them leads to an unpleasant experience. Basically, the reason I decided to leave FB is that the volume and frivolity of information it generates isn't worth the amount of attention I was investing in it. Of course I could have just decreased my use of FB, perhaps logging in just once or twice a week instead of daily. But FB has clever ways of making that very hard- sending you notices even when it is nothing truly noteworthy, having other apps that require a FB account to access, etc.

My decision to leave FB had nothing to do with recent stories of personal information being leaked etc. I just decided the presence FB had morphed into in my life over the past 5 years was no longer an invited one. And yet I find it hard to reduce it's presence... it's an "all-or-nothing" presence. And so I have decided to go with "nothing", for at least a year. Then I will re-assess how I feel about it.

Before FB came into my life I spent much more time reading the NY Times, Washington Post, and journals in science, the humanities and social sciences. I spent more time blogging about substantive issues related to my research on this blog. I want that more substantive focus to return to my free-time. I would rather be reading the news than my FB feed. And I would rather be revising a paper than liking someone's pet photo or witty comments on a Trump tweet. And I would rather spend my time socializing with friends "face-to-face", being "conversationally present" with them, than virtually "liking" posts.

I know quitting FB for (at least a year) will not be easy. Perhaps I will cave and end up re-activating my account. I have tried to quit before, only to re-join when I realized I needed to contact someone (and FB was the easy way to track them down) or wanted to remain connected to members of the FB groups I joined, or see a picture or video I had posted on FB. But I am confident reducing the amount of social media in my life will improve the quality of my life, primarily because it will free up more time for me. Time I could spend exercising, meditating, doing yoga, reading the news, etc. I am not sure how it will go. Hopefully a year from now I can offer some informed judgement on whether or not my life goes better or worse with FB in it. Time will tell!

Cheers,
Colin

Gene Patents in AJOB

The December issue of the American Journal of Bioethics contains this target article on my argument for gene patents. The abstract:

In 2012, a new and promising gene manipulation technique, CRISPR-Cas9, was announced that seems likely to be a foundational technique in health care and agriculture. However, patents have been granted. As with other technological developments, there are concerns of social justice regarding inequalities in access. Given the technologies’ “foundational” nature and societal impact, it is vital for such concerns to be translated into workable recommendations for policymakers and legislators. Colin Farrelly has proposed a moral justification for the use of patents to speed up the arrival of technology by encouraging innovation and investment. While sympathetic to his argument, this article highlights a number of problems. By examining the role of patents in CRISPR and in two previous foundational technologies, we make some recommendations for realistic and workable guidelines for patenting and licensing.

My Open Peer Commentary reply to the target article is published here. A sample:

Our social justice lens thus ought to be a multifactorial lens, rather than a one-dimensional lens, in terms of the values and aspirations it addresses. Social justice requires not only the mitigation of serious disadvantage, but it also requires promoting the public good more generally (including through innovation), respecting liberty,and prudence in investing limited governmental resources. I do not believe appeals to any one value or principle will permit us to proclaim that, “all-things-considered,” justice prohibits or permits gene patents. The ancient proverb “the devil is in the details!” is very apt in the case of morally assessing intellectual property rights. A conceptual-level analysis of gene patents and intellectual property more generally misses these details because it focuses on a limited set of normative concerns (typically only liberty or equality).

I look forward to reading the other Peer Commentaries, and am grateful to Feeney and colleagues for their engagement with my argument for gene patents.

Cheers,
Colin

Wrapping up my final week of living in Hawaii

My time as the Fulbright Visiting Research Chair at UH Manoa is quickly coming to an end. I have had a great experience this term enjoying the beauty of this Island and the riches of this campus.

Professionally, having so much time to dedicate to reading and writing has been a unique opportunity. I have tried to make the most of it, writing some new papers related to genetics and ethics, and reading many of the foundational books for my next new project on play and the good life.

Personally, living away from family and friends has been both a challenge and an opportunity for personal growth. I will have many fond memories of my time here in Hawaii. I put together a random list of the top things I will miss most about leaving:

The weather and beauty of this island (Oahu).

New friends I made while here (especially the members of the “Shut up and Write! Honolulu” meetup group).

The comfort of hearing “Aloha!” and “Mahalo” on a daily basis.

The luxury of having so much time to dedicate to reading and writing.

The incredible gym facility on campus, a 5 minute walk from where I was living on campus.

The sound of one of the campus roosters crowing at 5am.

Walking so much (with no car I walked everywhere, an average of 12km a day).

My fav local restaurant which I would frequent at least once a week.

I have been very fortunate to have had this opportunity. And I cannot wait to get back home to family and friends who I have missed dearly!

Cheers,
Colin

Why do I write about genetics?

Over the course of nearly two decades I have published on many different topics: free speech, judicial review, ideal theory, a citizens' basic income, patriarchy, toleration, etc. But one topic has dominated most of my thoughts and publications- advances in genetics and the ethical and social consequences of this so-called "genetic revolution".

Among my colleagues in the field of political theory I am, admittedly, an oddity. "Why genetics?", one might reasonably ask. Why genetics especially when there are so many pressing issues like global justice, the legacy of colonialism, race, patriarchy, democracy in the era of Trump, etc.? It is a valid question to pose. And the fact that the issue of genetics doesn't have obvious, intuitive "pull" on our moral sensibilities as a pressing societal issue in need of normative theorizing is a large part of the reason why I am attracted to the topic.

Here is a summary of the 3 main reasons I have invested so much into a research project that is much more risky to pursue (given the career rewards of inward specialization vs the costs and risks of interdisciplinarity):

1. My intellectual curiosity: I find the kind of interdisciplinary research I engage in on these topics simply fascinating. I have learned about evolutionary biology, medicine, demography, aging, psychology, etc. I am never bored! And I think that is absolutely crucial to keeping the passion for research burning over the long hall. There is always something new and interesting to learn and write about. Some academics flourish looking inward on problems, writing for specialists on highly technical issues within a sub-field. But my interest has always been with pitching things at a more general level, linking key insights from diverse perspectives and sources- tying to adopt a provisional and humble "bird's eye view" of the moral landscape to help us re-assess how successful we are with tackling the pressing societal issues of today and tomorrow.

2. The societal importance of the issues: I chose to write on the ethical and social implications of the genetic revolution because I think it is one of the most significant developments of this century. From helping us prevent and treat disease to enhancing our capabilities (e.g. longevity, happiness, intelligence, etc.), gaining new insights into our biology opens the door to many new possible innovations and developments. There is a wealth of topics to be addressed, but so few scholars seriously devoted to tackling them in detail. Which leads me to (3)....

3. It is currently neglected: Science policy is one of the most important areas of good governance, and yet it is almost completely ignored by political theorists. A voluminous amount of ink has been spilt by theorists debating the political economy- capitalism, socialism, the welfare state, a basic income, etc. But good governance involves so much more than determining how wealth and income should be distributed. Technology and innovation are equally, if not more, important (for they drive the creation of wealth in the first place!). And yet our undergraduates are not provided with the analytical tools to think critically and cogently about such issues. This is a real shame in my view. So I try to redress this by at least engaging my own students with some of these topics in my undergraduate and graduate level courses.

Cheers,
Colin