Saturday, June 30, 2007

Nanoethics Volume

The editors of this interesting book just informed me that they expect it to come out next month. Here is the book description from the Wiley site:

Nanoethics seeks to examine the potential risks and rewards of applications of nanotechnology. This up-to-date anthology gives the reader an introduction to and basic foundation in nanotechnology and nanoethics, and then delves into near-, mid-, and far-term issues. Comprehensive and authoritative, it:

Goes beyond the usual environmental, health, and safety (EHS) concerns to explore such topics as privacy, nanomedicine, human enhancement, global regulation, military, humanitarianism, education, artificial intelligence, space exploration, life extension, and more

Features contributions from forty preeminent experts from academia and industry worldwide, reflecting diverse perspectives

Includes seminal works that influence nanoethics today

Encourages an informed, proactive approach to nanoethics and advocates addressing new and emerging controversies before they impede progress or impact our welfare

This resource is designed to promote further investigations and a broad and balanced dialogue in nanoethics, dealing with critical issues that will affect the industry as well as society. While this will be a definitive reference for students, scientists in academia and industry, policymakers, and regulators, it's also a valuable resource for anyone who wants to understand the challenges, principles, and potential of nanotechnology.

My contribution to the volume, as I noted last Fall, is entitled "Deliberative Democracy and Nanotechnology". Here is a sample from my contribution:

Two recent reports concerning nanotechnology illustrate both its potential promise and its potential peril. The first report is the encouraging news that nanotechnology might help in the delivery of gene therapy (Dobson, 2006). World-wide, there are over 1 000 clinical trials for gene therapy. There are currently 797 clinical trials for cancer, 102 trials for monogenetic diseases and 106 for vascular diseases.[1] Gene therapy involves switching off defective genes or inserting desirable genes into the cells to prevent or cure disease. One of the major obstacles facing gene therapy has been gene delivery. That is, ensuring that the desired genes get into the correct cells. Nanotechnology might provide a solution to this problem. The efficacy of magnetic nanoparticle-based gene delivery has been demonstrated most clearly in vitro (Dobson, 2006, 286). This technique involves coupling genetic material to magnetic nanoparticles. “The particle/DNA complex (normally in suspension) is introduced into the cell culture where the field gradient produced by rare earth magnets (or electromagnets) placed below the cell culture increases sedimentation of the complex and increases the speed of transfection (Dobson, 2006, 283).

The optimism one takes from the encouraging news about utilizing nanoparticle-based gene delivery is often tempered by news reports concerning the potential dangers of nanotechnology. The April 15th (2006) issue of the Economist reported the story about Magic Nano, a bathroom cleaner that contains tiny silicate particles that reduce the scope for dirt and bacteria to cling to surfaces. Magic Nano went on sale in Germany in March 2006. Three days after it went on sale it “was withdrawn from the market after nearly 80 people reported severe respiratory problems and six were admitted to hospital with fluid in their lungs” (Economist, 2006, 80). The Magic Nano incident lead critics of nanotechnology, like Action Group on Erosion, Technology and Concentration (ETC Group), to call for a global moratorium on nanotech research[2]. The concern (whether just perceived or real) that nanomaterials pose serious environmental, health, and safety risks is one of the major obstacles facing these new technologies.

The contrasting stories we hear concerning the potential pros and cons of nanotechnology illustrate the importance of taking seriously the question of what would constitute an ethical regulation of nanotechnology. Nanotechnology covers such a diverse spectrum of technologies (e.g. therapeutic, etc.) that different values and principles are appropriate for regulating different kinds of nanotechnologies. Those who feel that both sides of the pro- and anti-nanotechnology debate have valid concerns might feel that the real challenge we face is finding a reasonable compromise between these different values rather than crowning any one value (e.g. efficiency) or principle (the pre-cautionary principle[3]) as “supreme”.

One social theory that offers us a pluralistic and contextual ethical analysis of nanotechnology is deliberative democracy. Instead of trying to win a philosophical argument concerning the viability of first-order principles (e.g. efficiency, safety, etc.), deliberative democrats are more concerned with determining what would constitute a reasonable balance between conflicting fundamental values. In this paper I will examine what deliberative democracy can prescribe in terms of addressing the ethical and social concerns raised by nanotechnology. By examining how deliberative democracy applies to nanotechnology we see that an ethical regulation of nanotechnologies requires a division of labor between many different institutions and individuals. I argue that deliberative democracy prescribes that an ethical regulation of nanotechnologies requires responsible legislative activism which in turn requires accurate scientific information as well as an informed and reflective citizenry. Thus the ethical obligations of deliberative democracy extend to the way scientists conduct and communicate their research as well as to the way the media reports about nanoscience. The actions of scientists and journalists play a vital role in the formation of the reflective preferences of the larger citizenry. Thus deliberative democrats believe that informed, reasoned debate on accommodating the different stakes involved with regulating different kinds of nanotechnologies is essential if we hope to implement a fair and humane regulation of these new technologies.



Friday, June 29, 2007

Last Issue of Science (June 2007)

In the post yesterday I said that normative theorists can benefit by exposing themselves to even just periodic updates on the empirical considerations that arise in the effort to mitigate different kinds of disadvantage. And the latest issue of Science contains a wealth of such information. Here is a sample of some of the highlights from that issue:

Democratic Congress Begins to Put Its Stamp on Science
Eli Kintisch

Six months into their rule on Capitol Hill, the Democrats have begun to make their mark on science policy. Many of their moves have underscored differences with the White House, including efforts to overturn the ban on federal funding for work on new embryonic stem lines, prominent accusations that the Bush Administration has politicized science advice, and proposals to increase and reshape funding for climate change research. But as far as the Administration's most prominent science initiative is concerned, the new Congress has so far been more than supportive, at least in loosening the purse strings: It is poised to top the president's generous requests for the multiagency American Competitiveness Initiative (ACI), which is aimed at sharply increasing funds for the physical sciences.

Relative Differences: The Myth of 1%
Jon Cohen

"For many, many years, the 1% difference served us well because it was underappreciated how similar we were," says Pascal Gagneux, a zoologist at UC San Diego. "Now it's totally clear that it's more a hindrance for understanding than a help."

Using novel yardsticks and the flood of sequence data now available for several species, researchers have uncovered a wide range of genomic features that may help explain why we walk upright and have bigger brains--and why chimps remain resistant to AIDS and rarely miscarry. Researchers are finding that on top of the 1% distinction, chunks of missing DNA, extra genes, altered connections in gene networks, and the very structure of chromosomes confound any quantification of "humanness" versus "chimpness." "There isn't one single way to express the genetic distance between two complicated living organisms," Gagneux adds.

A Reversal of Fortune in HIV-1 Integration
Alan Engelman

A customized enzyme that effectively excises integrated HIV-1 from infected cells in vitro might one day help to eradicate virus from AIDS patients.

A Narrow Road to Cooperation
Robert Boyd and Sarah Mathew

In every human society, from small-scale foraging bands to gigantic modern nation states, people cooperate with each other to solve collective-action problems. They share food to ensure against shortfalls, risk their lives in warfare to protect their group, work together in building canals and fortifications, and punish murderers and thieves to maintain social order. Because collective action benefits everyone in the group, whether or not they contribute, natural selection favors non-contributors. So, why do people contribute? Everyday experience suggests that people contribute to avoid being punished by others.

But this answer raises a second question: Why do people punish? From an evolutionary perspective, this question has two parts: First, how can contributors who punish avoid being replaced by "second-order" free-riders who contribute but do not incur the cost of punishing? There has been much work on this topic lately, and plausible solutions have emerged (1-5). However, these solutions are not much good unless we can solve the second problem: How can punishment become established within populations in the first place? On page 1905 of this issue, Hauert et al. provide the first cogent answer to this question (6). Surprisingly, they find that punishment can become established if there are individuals who neither produce collective benefits nor consume collective benefits produced by others.

Seeking Clarity in Hormones' Effects on the Heart
Jennifer Couzin

Women hitting menopause these days can be forgiven for feeling baffled about the risks of hormone replacement therapy (HRT). Several years ago, researchers announced that the Women's Health Initiative (WHI), two massive trials of more than 27,000 women, had shown HRT to be surprisingly unhelpful, even unsafe--in particular, a combination of estrogen and progestin appeared to cause heart attacks rather than prevent them, as expected. Hormone use plummeted.

But now new studies that break down WHI participants along age lines are suggesting that women in their 50s, those most likely to suffer menopause symptoms that can be helped by hormones, may not experience cardiac risks from the drugs after all--and might even benefit, depending on whether they received the combination or estrogen alone. Even among researchers who collaborate in the field, the findings remain both nuanced and contentious, with some disagreeing over how to interpret the data they collect. Researchers and the reporters who cover their work are struggling, too, in assessing the overall risk-benefit balance of HRT amid a stream of papers that examine individual risk factors in isolation.


UPDATE: There is also this story, which is also covered in The Guardian.

Al Gore (2008)? (update)

This piece in today's Guardian is encouraging news that there may be reason to keep this dream alive. The history books couldn't write a better political comeback than this!


Thursday, June 28, 2007

Genetic Justice (Where to Begin?...#2)

This long post is an update to this earlier post.

At the “Genetics and Justice” conference next week I am giving a 30 minute presentation entitled “Genetic Justice: Where to Begin?” . That talk will build upon the ideas expressed in my earlier blog post. And this talk will also outline some of the central methodological concerns that underpin my book-in-progress on this topic.

Recall, from various posts scattered at places like here, here and here, that I have expressed many discontents with the mainstream approach that moral and political philosophers take to applied ethics and distributive justice. Working on the issue of genetics and justice for almost 7 years now has really had a profound impact on how I view the (in)adequacy of contemporary theories of distributive justice. So my thoughts in this post might explain why I have become disillusioned with some of the theories I was once committed to.

Firstly, lets start with what a theory of genetic justice is a theory of. A theory of genetic justice seeks to answer the following question: what would constitute a fair distribution of genetic endowments? From the moment we are conceived, we each inherit our own unique genetic endowments (two copies of most genes, one from our mother and one from our father). And the genes we inherit can have a profound impact on many different phenotypes, like our health, vigour, intelligence and imagination (what Rawls calls the "natural primary goods").

Historically it has been the case that the distribution of genetic endowments in any given society has been the result of happenstance. That is, the distribution was the random result of the procreative choices of parents and our evolutionary legacies as a species. But as we move from a “pre-revolutionary” scenario (that is, one where the natural lottery of life is beyond our control) to a “post-revolutionary” scenario we need a theory of genetic justice.

In the post-revolutionary scenario the basic structure (to use Rawls’s terminology) of society influences the distribution of genes. That is, the regulatory framework we implement for biomedical research will determine who receives these benefits (e.g. genes that help prevent disease, increase strength, intelligence, boost our immunity, help promote valued behavioural characteristics, the list is almost endless!) and how quickly (and costly, safe, effective, etc.) these benefits are realised.

How would we know what constitutes a just or unjust distribution of the by-products of the genetic revolution? Having a theory of genetic justice on hand will help ensure that we respond, in a fair and proportionate manner, to the duty to mitigate genetic disadvantage.

We are currently in a transition stage between the pre and post revolutionary scenarios. I have already posted numerous links to the stories describing how the genetic revolution is changing our lives (like the story of John Robertson, Parker DesLauriers , Nathan Klein, Hashmukh Patel, those with CF, etc. and those are only a small fraction of the 1000+ clinical trials for gene therapy that are occurring worldwide).

If we hope to implement the demands of genetic justice we must begin to take the question of what constitutes a fair and proportionate response to genetic disadvantage seriously. Otherwise we risk committing an injustice against the most vulnerable members of our societies. So where should we begin? That, in my opinion, is also a very important question.

I think the inclination for most moral and political philosophers will be to start from their favourite normative theory- utilitarianism, Kantian ethics, egalitarianism, libertarianism, feminism, etc, etc… - and simply pursue what I call the “add genetics and stir” approach. That is, add genetics to the currency of distributive justice and simply incorporate it into one’s favoured distributive principle (e.g. liberty, equality, sufficiency, priority, etc.) The central aim of my talk next week will be try to persuade normative theorists from doing exactly that.

Changing old patterns of thought is tough, but it is something we must be prepared to do if we want our normative theories to help prepare us for meeting the complex myriad of challenges we now face, and will in the decades to come.

So what’s wrong with the strategy of “add genetics and stir”? Part of my long answer would be a beef with the principled approach to justice more generally (see here) But to make a long story short… the strategy of the “add genetics and stir” approach would no doubt be dominated by what can be called “first-best” conceptualism. I admit that once I started working on genetic justice this was the tactic I first took. But the more I learned about the empirical considerations at stake the more I realised that appeals to the something like the Priority View, or Sufficiency, for example, was not going to be enough to make serious headway on these issues. And so I backed away from the aim of trying to develop a “first-order” social theory and instead become more interested with bringing to the fore the complex myriad of concerns that arise in this context.

The discipline is certainly not designed to reward this kind of deviation from the norm and so it requires a theorist to be willing take some risks. But I had reached a stage in my career such that I could afford to take such risks and this is a topic I am passionate about and thus refused to let the stagnancy of the status quo quash my enthusiasm to pursue interdisciplinary research. Instead of waiting for the solution to arise from a technical philosophical paper in the latest issue of Ethics or PPA, I realised my energies were best spent trying to keep abreast of the actual empirical work being done in the field of human genetics. And so, at least when it comes to this part of my research, I am more likely to read (and get excited by) a piece in the latest issue of Science or Nature Genetics than I am most philosophy or political theory journals. Sure most of the technical science stuff goes way over my head, but exposing oneself to just periodic updates in the field helps one get a sense of the “big picture” (e.g. where the science is, where it might go, the obstacles, the breakthroughs, etc.).

Rather than spending most of my time considering the counterfactual question of what genetic constitutions people would chose in a Rawlsian original position, I have learned about the role genes and environment play in the development of disease, the different obstacles facing experimental interventions like gene therapy, and the role intellectual property plays in biomedical research. And I have only begun to scratch the surface. But I am convinced that normative theorists should spend more time being exposed to these empirical considerations rather than investing most of their energies into abstract hypotheticals. My empirical explorations thus awoke in me a desire to ask questions I never really asked before (e.g. what is the aim of normative theory?) And thus delving into the empirical has had a profound impact on my philosophical sensibilities (for the better, in my opinion!).

All this has lead me to take a much more pluralistic, and provisional stance on the issue of genetic justice. And this stance is the one that I now believe is the just response. And so I want my theory to inspire a moral discourse that does justice to the complex tradeoffs involved with these decisions, rather than bracketing them by ignoring the constraints of scarcity, or our intrinsic vulnerability, etc.

OK, so lets give some real details now. Where do we begin? Recall from my earlier post that I recommend following John Dunn’s approach to political theory. According to this approach, "the purpose of political theory is to diagnose practical predicaments and to show us how best to confront them". So what are the predicaments raised by the genetic revolution and how should we confront them? That is my main concern. Here I touch very briefly on some issues that should inform our answers to those questions.

Dunn claims that a theorist must exercise the following three skills:

1. Ascertaining how we got to where we are and understanding why things are this way.

2. Deliberating about the kind of world we want to have.

3. Judging how far, and through what actions, and at what risk, we can realistically hope to move this world as it now stands towards the way we might excusably wish it to be. (Dunn, 1990, p. 193)

For now I will limit my discussion to some of the important issues that arise when we pay attention to 1.

So where are we? With respect to the distribution of our genetic potentials for the natural primary goods, we have a situation of genetic diversity. In many respects this is good thing- it makes the world more interesting by having variety, it helps secure the perpetuity of the species, etc. But there is also a downside to this diversity- its inequality. In particular, the dire life prospects it imposes on the genetically disadvantaged.

So how did we arrive at this situation? Why are things this way?

Sometimes the story of human disease is the story of a single malfunctioning allele (e.g. single gene disorders like HD). But if we consider the most prevalent diseases, like cancer, these are multifactorial conditions- they arise from a combination of environmental factors and mutations in multiple genes.

One can appreciate these complexities by asking the question: why do we develop cancer? There are two kinds of answers to this question, both are important.

The first answer is to focus on the proximate causal mechanisms- genes and environment. So we need to bear in mind that both internal (e.g. faulty BRCA genes can increase risk of breast cancer) and external factors (e.g. smoking can increase risk of lung cancer) can cause cancer. By appreciating the complex role genes and environment play we will not treat genetic justice as if it exhausts the demands of distributive justice more generally.

In addition to our genes, our education, wealth, access to basic healthcare, etc… are all important parts of the story of how different phenotypes develop. And thus we should not ignore these other considerations when deriving what the principles of genetic justice are. If an account of genetic justice is primarily driven by “first-best” conceptualism then it will not take these empirical considerations seriously. And thus it won’t yield prescriptions that are, “all-things-considered”, sage and just.

There is a second important answer to the question- Why do we develop cancer? I noted this before. This answer takes a “big picture” perspective of our look at the bigger causal networks at play. Cancer risk is underpinned by intrinsic fallibility. It reflects our evolutionary legacy. Recall this passage from Mel Greaves that I emphasized before:

The blind process through which we and other species have emerged carries with it inevitable limitations, compromises and trade-offs. The reality is that for accidental or biologically sound, adaptive reasons, we have historically programmed fallibility. Covert tumours arise constantly, reflecting our intrinsic vulnerability, and each and every one of us harbours mutant clones with malignant potential.

Having an informed view of the kind of biological creatures we are will have an important bearing on what we think the demands of justice are. For example, many prominent accounts of just healthcare invoke the notion of “normal species functioning” and use this as a benchmark for determining if a demand of justice arises (and thus treatment should be provided). The story I have just outlined shows why this benchmark, and the therapy/enhancement distinction, is misguided. We are, as a species, intrinsically vulnerable. There is no “disease-free” or “risk-free” benchmark from which we can derive the principles of genetic justice. So the important question is- what constitutes a fair and proportionate response to all risks (e.g. genetic, social, etc). We must grapple with the difficult issue of tradeoffs, something the notion of “normal species functioning” downplays or ignores.

The real important questions, when making a determination if a genetic intervention is just, is not “will it restore normal species functioning”, but rather:

(1) what is the likelihood that the harms of non-intervention will be realised?
(2) how severe are these harms?
(3) what is the likelihood that intervention will have the desired results?
(4) What are the costs of intervention (and non-intervention)?
(5) How safe, efficacious and costly are other forms of intervention (e.g. environmental intervention)?
Etc., etc…..
These tough questions are ignored if we invoke the model of normal species functioning and the principle of a genetic decent minimum. Such idealized principles distract us from the real important questions and raise the danger that the principles of genetic justice will be insulated from the larger demands of distributive justice.

Let me give two more examples that illustrate the importance of appreciating our evolutionary history.

Recall the findings reported here concerning the aggression-related gene. People who have this gene, especially males, have a hyperactive alarm center and under-active impulse control circuitry that biases their brain towards impulsive, violent behaviour. Why do some people have this gene? Again, if we reflect on our history we can appreciate why this is the case. In a Hobbesian state of nature, having this gene could be beneficial. It is better to err on the side of defection than be naturally inclined to trust people. But this gene is not advantageous in all social settings. In particular in modern capitalist societies. Indeed, it could be disadvantageous. So the judgements we make about the value or disvalue of particular genetic traits will depend on background considerations about the society in question.

Here is another good example- Sickle Cell Disease (see here). This disease is an inherited disorder in which red blood cells are abnormally shaped. It can cause serious infections, damage to body organs etc. If you only inherit one copy you have the sickle cell trait, and if you inherit both copies you develop the disorder.

In the United States this condition mostly affects African Americans? Why? The answer has to do with the evolutionary history of West Africans (watch the useful PBS video here). 4000 years ago malaria came to West Africa. Having one copy of the sickle cell gene protected one from malaria, but having two copies caused the disease. So Nature pursues its own tradeoffs to protect us as a species, sometimes with tragic results for us as individuals.

So the lesson normative theorists can learn by exercising this first skill, in the context of a theory of genetic justice, is that by paying attention to our actual history and biology (rather than invoking abstract idealized hypotheticals) we realise that diseases vary in terms of the role genes and environment play, their severity, age of onset, possible ways of treating them, etc… This is important for one’s normative theory because these empirical considerations ought to inform the judgements we make concerning what constitutes a fair and proportionate response to genetic disadvantage.

I have only touched (very briefly) on the first skill. There is much more to be said here. But I’m afraid this will have to suffice for now (for the longer story come along to the Conference on Monday!).


Wednesday, June 27, 2007


Son #3, Jake, was born early this morning. Mother and baby are both doing great.

As fate would have it I was on a flight overseas and thus didn't even know my wife went into labour (she wasn't due for another 2.5 weeks) just an hour after I took off from Toronto airport. So when I arrived back in Oxford and called home I received the message that I was a father (again)! I am very sad I missed his birth, as I was very involved (well, as much as a father can be... the mom does the real work!) with the birth of our first two children. But I am just thrilled mother and baby are healthy and well.


Sunday, June 24, 2007

Gene Therapy for Parkinson's Disease (Update #2)

Some of my previous posts, like this one here and here, have mentioned Parkinson's Disease and gene therapy. Gene therapy for Parkinson's Disease looks promising as the latest report in The Lancet has an article on a Phase 1 trial for the safety and tolerability of gene therapy for Parkinson's. Here is an excerpt:

The brain is an attractive organ for gene therapy, because production of biologically active molecules within the brain might circumvent poor penetration of compounds that are delivered systemically due to a tight vascular blood–brain barrier. Local gene expression might also focus therapy in specific brain regions, thereby avoiding exposure of other areas to agents that might cause undesirable effects. Several attempts have been made to use gene therapy for malignant tumours, including those in the brain, but the main aim of these studies was to destroy target cancer cells.3 A trial aimed at correcting the genetic defect in the rare and lethal paediatric neurogenetic Canavan disease was also undertaken.4 Furthermore, a phase I study of intracerebral transplantation of genetically-modified cells in patients with Alzheimer's disease (“ex-vivo” gene therapy) was reported.5 However, the use of modified viruses (vectors) to introduce genetic material into endogenous neurons directly (so-called “in-vivo” gene therapy) has not been previously attempted for any adult neurodegenerative disorder.

....Our results show that AAV-mediated gene transfer can be done safely in the human brain, with no evidence of substantial toxic effects or adverse events in the perioperative period and for at least 1 year after treatment. Most patients have been followed up for more than 2 years after surgery, with some for more than 3 years. No deaths and no evidence of substantial adverse events were reported.

The promise of gene therapy has yet to be fulfilled; however, the ability to alter cellular function genetically remains a powerful potential opportunity for treatment of various devastating diseases. Safety and efficacy issues continue to raise concerns, especially when gene therapy is applied to diseases such as neurological disorders, in which there is limited prior experience. Indeed, our original protocol was modified by federal reviewers to restrict treatment to only one hemisphere of the brain because of the concern that unexpected toxic effects might produce a more devastating outcome if they happened bilaterally.

There is also an MP3 audio clip on this topic on this page.


Wednesday, June 20, 2007

Conference Programme

The programme for the "Genetics and Justice" Conference is now finalized (below). The programme is comprised of speakers from different disciplines (e.g. philosophy, medicine, law, sociology) and covers a diverse range of ethical, social and legal issues including gene therapy for CF, pharmacogenetics, biobanks, gene patents, enhancement and more!

Genetics and Justice Conference
July 2nd and 3rd
Oxford University
Lecture Theatre, Manor Road Building

Monday, July 2nd
10:00am – 10:25 Registration
Tea and Coffee will be available in the Common Room

10:25 Welcome and Opening Remarks: Colin Farrelly

10:30 – 12:30pm Session 1 Chair: Matthew Liao
Dan Brock (Department of Social Medicine, Harvard), 'Is Selection of Children Wrong?'
Tom Baldwin (Former Deputy Chair of the Human Fertilization and Embryology Authority/Philosophy, York), 'PGD and the Welfare of the Child'

12:30 – 1:30 Lunch, Common Room

1:30 – 3:30 Session 2 Chair: Mark Sheehan
Richard Gold (Director of the Centre for Intellectual Property Policy, McGill), 'Myriad Genetics: A Case Study'
Deborah Gill (GeneMedicine, Oxford,), 'Gene Therapy for Cystic Fibrosis Lung Disease - Who Gets Treated?'

3:30 – 4:30 Wine Reception, Common Room

4:30 – 6:30 Session 3 Chair: Rebecca Roach
Colin Farrelly (Politics, Oxford/Waterloo), 'Genetic Justice: Where to Begin?'
Aubrey de Grey (Biogerontology, Cambridge), 'The Duty to Combat Aging'

Tuesday, July 3rd
10:00am – 10:30 Registration
Tea and Coffee will be available in the Common Room

10:30 – 12:30 Session 4 Chair: Nick Bostrom
Adam Hedgecoe (Sociology, Sussex), 'Justice and Pharmacogenetics: the Example of Herceptin'
Jane Kaye (Ethox, Oxford), 'Biobanks and Benefit Sharing'

12:30 – 1:30 Lunch, Common Room

1:30 – 3:30 Session 5 Chair: Nicholas Shackel
Ruth Chadwick (Director of the Center for Economic and Social Aspects of Genomics, Cardiff University), 'The HUGO Principles of Genetic Research: What Has Changed Since 1996?'
Michael Parker (Director of Ethox Centre, Oxford), 'The Ethnography of a Global Malaria Genomics Consortium'

3:30 – 4:00 Tea and Coffee Break, Common Room

4:00 – 6:00pm Session 6 Chair: Colin Farrelly
Julian Savulescu (Director of the Program on Ethics of the New Biosciences, Oxford), 'The Case of Performance Enhancement in Sport'
Rebecca Bennett (Bioethics, Manchester), 'The Principle of Procreative Beneficence: A Critique'


Sunday, June 17, 2007

PGD Study: No More Risky than IVF

This BBC News story reports that a recent study on the safety of Preimplantation Genetic Diagnosis (PGD) concludes that PGD poses no more of a risk than standard IVF. What does PGD involve? Follow the link at the bottom of my previous post here.

This study is good news and should help strengthen the case for relaxing our attitudes towards utilising PGD, not only for screening for genetic disorders, but also for non-medical purposes like gender selection. I posted some thoughts on this issue back in January, after I presented my paper on the non-medical uses of PGD (see here).


Wednesday, June 13, 2007

Virtue Jurisprudence Book

As noted by Larry Solum over on his excellent blog Legal Theory, our co-edited volume entitled Virtue Jurisprudence (Palgrave MacMillan) will be out in a few months. It was a real joy working on this volume with Larry, and all of the contributors to the volume were very accommodating and helpful, helping us keep to the various deadlines, word counts, etc. we needed to meet.

Editing a volume is not always such a pleasant and rewarding endeavor, but I suspect it helps to have contributors who work on a topic like virtue ethics. For they can appreciate the importance of virtues like generosity, industry and reliability!

The book brings together scholars from law, philosophy, and politics and illustrates the breadth of insights the virtue ethics tradition can offer contemporary legal theory. The essays in the volume address a diverse range of topics, including: judicial review, the rule of law, tort law, punishment and the ethics of lawyering.

Here is the table of contents for the volume:

An Introduction to Aretaic Theories of Law
Colin Farrelly & Lawrence B.Solum

The Central Tradition
Robert George

Prudence, Benevolence, and Negligence: Virtue Ethics and Tort Law
Heidi Li Feldman

Judges of Character
Suzanna Sherry

Civic Liberalism and the 'Dialogical Model' of Judicial Review
Colin Farrelly

A Virtue-Centred Account of Equity and the Rule of Law
Lawrence B.Solum

Natural Justice: An Aretaic Account of Virtue of Lawfulness
Lawrence B.Solum

Virtue, Vice, and Criminal Liability
Antony Duff

On Aristotelian Criminal Law: A Reply to Duff
Kyron Huigens

Two Ways of Doing the Right Thing
Rosalind Hursthouse

We hope the volume will appeal to scholars and students in diverse disciplines.


The Personal is Political: Part 2

In a previous post I briefly defended the slogan “the personal is political”. This slogan can mean different things to different people. Feminists like Susan Okin, for example, invoke this principle to highlight the fact that what goes on in the family (e.g. who does the domestic labour, how we raise our children, etc.) is political. And I agree completely with Okin about this. In this particular instance the action of just one individual can have a direct positive impact- reducing oppression- on the people closest to us (i.e. one’s spouse and children).

I disagree, however, with G. A. Cohen’s egalitarian invocation of the slogan. Or, perhaps more accurately, I disagree with Cohen’s suggestion that John Rawls’s difference principle (which requires us to maximin) should apply to the decisions we make concerning the kind of work we are willing to do.

When it comes to deciding what kinds of jobs we will spend most of our waking hours doing I do not think a stringent prioritarian principle is defensible. But I do think our attitudes towards consumption are political. And in that earlier post I argued that such attitudes can be unjust when they impair our ability to implement the demands of socio-economic justice.

A few months ago I read this column in the Globe and Mail entitled “Single and Green”. And this article made me realize how easy it is for advocates of a particular cause to push the “personal is political” slogan too far. So far that they run the risk of jeopardizing the very cause they wish to promote. In this case the cause in question is the environment; no doubt a worthy cause and one conscientious citizens should take seriously. But the author of this article goes too far by characterizing single adults as “environmental time bombs”. She goes so far as to suggest that, to help minimize their ‘ecological imprint’, single people should consider living in co-housing accommodation (so they can share amenities with others), or participate in community kitchens. She ends the piece by stating:

Short of mating for life or joining a commune, if you happen to be unattached and environmentally conscious, it may be time to test your horse sense and peruse the classifieds: Eco-friendly person seeks like-minded roommate to lessen ecological footprint. Must be cat positive.

Highlighting the ecological consequences of being single, or getting divorced -which she also seems to condemn for its ecological consequences- raised a number of interesting and heated responses from her readers. In fact, I found the posted comments the most interesting thing about this article. Here are a few (unedited) responses posted on the Globe’s comments section:

'Solo dwellers are an Environmental time bomb' ....more sensationalist drivel and meaningless generalizations featured in this ludicrous article. Excuse people for having to live. Excuse people for wanting a sense of privacy. We are not ants. Heidi Sopinka needs a reality check. We can do with less of the subjective, hysterical sensationalism this article purports. My response to this article is.....So What??

....Halarious. This is your future, Canada. Living with 6 people, in 600 sqft boxes in the sky in the center of your city, bathed in the cold, sterile glow and hum of a nice, efficient, CFC lightbulb, eating raw patatoes grown down the street, shivering in the dark while clutched together to stay warm, but content with the knowledge that you are doing your part to save the planet from warming by 0.1 degrees by 2421 AD.

....Totally ridiculous. First they feel bad because they are alone and now this nut bar is trying to make them feel about it! Last I looked these single people aren't living in 3000 square foot homes in the burbs, driving their SUVs to work and running their gas mowers for hours a week to mow their massive lawns. Most single people I know live in high density condos! On another note, I wonder what people like this author are going to do when global warming is proven to be a hoax. A whole industry of playing on peoples fear and guild will evaporate.

....Great -- first we have the smug marrieds, now we have the smug 'I did all my air travelling before air travel became environmentally uncool -- now all you lot need to stay home like me and live in ant colonies to save the planet' whatever-you-want-to-call-thems. Never mind the couples with the aforementioned kids, suburban homes, SUVs, mini-vans, multiple TVs and computers, Wiis, etc. etc. etc. The 'logic' of this article completely escapes me. The insufferable air of moral superiority does not. As if singles aren't stigmatized already for being single, usually by the smug marrieds themselves who conveniently ignore the infidelities going on right under their upturned noses. Better to be single, I say, than be stuck in a miserable relationship for the dubious benefit of the planet. Besides, having a cat on my lap helps me keep the thermostat down. PPTHPTHTHTHT!

....Well you need 'content' for fill the paper. Let see what will come Monday shall we?

....Oh, peachy. First my mother, and now the Greens, are after me for not marrying and reproducing. I don't know what is more insulting, the implication that singles aren't environmentally aware, or the slur on our culinary abilities. Fast food packaging is a serious problem? Have you ever watched a carpool mom in a minivan go through a drive-through? After a long day at work, time alone in the kitchen is a blessing. I garden, visit my local farm markets in season, compost, recycle, and toss half the waste my neighbours do. And you'd be lucky to get a dinner invitation, I've baked for Julia Child. There are so many flaws in this story, I don't know where to begin.

....I confess! I don't have a girlfriend and I live alone. Not only does this make me a loser, but an environmental misfit as well. Thank you for showing me the light, Globe and Mail! Now I'm off to the earth temple to beg forgiveness from Gaia. Maybe they will have communal meals there. And women.

....'Leaving a small footprint' is about the most irrational thing that has come down the environmental pike. People have a right to exist; people have a right to survive, people have a right to live a lifestyle superior to that of a cave dweller. Having said that, we should be doing all we can to be energy efficient and reduce pollution. If you want to minimize your 'ecological footprint'--lay down and die. That is the reductio ad absurdum of this argument.

I do not agree with every point made in response to this column but I must admit I think many of the responses were much more defensible than Sopinka’s suggestion that single people should radically re-think their life plans in light of its sub-optimal ecological consequences.

For me this article is a good example of the potential danger with the invoking the slogan “the personal is political”. The danger is that when one invokes the slogan to highlight any particular cause (e.g. the environment, egalitarianism, feminism, etc.) there is the risk of treating that particular cause as if we exist in a moral vacuum. As if no other pressing (and conflicting) concerns arise. This danger is unavoidable when the moral discourse is dominated by the appeal to abstract principles (rather than virtue).

Rather than consider how every particular aspect of our existence can negatively impact the environment, those serious about this cause need to frame their arguments in a proportionate and fair manner. Otherwise they run the risk of alienating people from the cause. Like most things in life, the real challenge is figuring out what constitutes a reasonable balance between the competing demands that are placed on us. Anyone who thinks the answers are obvious, and the solutions simple, is not giving these issues enough consideration. As social, temporal, finite beings we have a deluge of diverse moral obligations thrust upon us. Obligations to ourselves, to our closest intimates, to compatriots, to non-nationals and to future generations. Serious moral discourse requires much more than simply adding more obligations to this ever-expanding list.


Saturday, June 09, 2007

Rejuvenation Research Paper

My paper “Sufficiency, Justice and the Pursuit of Health-Extension” has been accepted for publication in the science journal Rejuvenation Research. The journal is “an international, interdisciplinary, peer-reviewed academic journal that covers all aspects of biology and biomedicine relevant to the combating, and ultimately the reversal, of age-related physiological and cognitive decline, in nonhuman species and eventually in humans”.

Here is a brief synopsis of the paper:

Should we, as a society, invest a greater amount of public funding into research projects that seek to better understand the aging process so that we can retard, and possibly even eliminate, aging? Let us call those who answer “Yes!” to this question those who support what we can call The Project. Of course those who count themselves as supporters of The Project will no doubt disagree with each other over many of the details of The Project. Such as its ultimate goal (e.g. compress morbidity or the elimination of senescence), how it can best be achieved, likely time-scales, etc. These finer details are all issues that I shall put to the side for the purposes of this paper. My primary concern is to critically examine the moral defensibility of one of the central assumptions which all proponents of The Project share. Namely that The Project is worthy of greater public attention and more public funding than it currently receives. To help make the case for this assumption more compelling I will refute what I take to be one the most formidable arguments against it. I call this argument The Justice Objection. When levied as a justice-based argument against The Project, The Justice Objection invokes more general considerations about justice that are consistent with what is called the Sufficiency View. This view maintains two theses (the first is a positive thesis, the second a negative thesis, Casal 2007): (1) justice requires we ensure that everyone rises above a certain threshold of welfare or wellbeing and (2) justice does not impose any distributive requirements beyond the positive thesis. By utilizing the tools of analytical political philosophy we can better understand what the Justice Objection is, and, most importantly, why it is mistaken.

The moral imperative to combat aging is an important, and challenging, applied topic that moral and political philosophers (as well as society in general) should take seriously. So I am very pleased about getting this piece into a science journal dedicated to these concerns. Many philosophers might not even contemplate submitting their work to journals outside of the discipline, either because they have an insular (perhaps even elitist) view of what research philosophers are suppose to do/ who their target audience should be, or they just assume (wrongly in my opinion) that journals in other disciplines would not be interested in hearing what philosophers have to say about these issues.

I think it is important to challenge traditional disciplinary boundaries, for this is necessary if we (i.e. normative theorists) hope to develop theories that can be applied to the real world. Furthermore, it is fascinating to see how other disciplines run their journals and the peer review process and to get feedback from referees in different disciplines. So pursuing interdisciplinary research has many benefits. Of course it is also challenging, as one must invest a good deal of their energies into keeping abreast of the empirical work being done on the relevant topic. And this requires one to exercise a different skill-set than that typically involved with pure conceptual analyses of values like liberty, equality and justice. And the latter, as I noted before, is the favourite pastime of most contemporary political philosophers.

I began seriously thinking about the moral imperative to combat aging about two years or so ago (and this event last year really spurred my interest, as I reported here). And when I teach my fourth year seminar “Genetics and Justice” we spend a few sessions on genetic enhancement. When raised with the prospect of combating aging students often express one (or both) of the following reactions: (1) how trite and trivial!(2)that is pure fantasy! My paper hopes to go some way towards showing why (1) is mistaken.

I believe (1) is mistaken for numerous reasons. Firstly, our societies currently spend an enormous amount of money trying to cope with the debilitating effects of aging. Aging has an enormous impact on the health of a population. It not only affects the wellbeing of individuals (making us more frail and susceptible to disease, causing loss of mental acuity, etc.), but aging also puts pressure on healthcare resources, has costs to our productive capabilities, etc. The stakes are thus very high. So the status quo is certainly not one that says “aging, how trite and trivial!”. All of us try (or at least should try) to retard the debilitating effects of aging by exercising, watching what we eat, etc. Should we not invest in biomedical research that could help us better promote the aims of extending healthy living? I believe we should. Such an aspiration is ingenious and noble, not trite or trivial.

So in this forthcoming paper I show how those who make The Justice Objection invoke an inappropriate principle (i.e. sufficiency) given the nature of the good at stake. When it comes to health we do not say that benefits to people above some threshold (like “normal functioning”) have no moral weight whatsoever. So while the sufficiency view may have some intuitive appeal when the good in question is wealth, it is not a defensible principle to invoke in the context of debates about health extension.

I do not address (2) in the paper but I want to offer some initial thoughts here. If those who say “Talk of retarding aging is mere science fiction” are implying that aging is an immutable process then they are simply wrong. (Of course if the question is- can we eliminate or even reverse senescence?- that is another matter). We already know that calorie restriction, for example, can influence the aging process. And cellular, molecular, and genetic studies of aging in in vitro models and in short-lived invertebrates have generated an impressive pace of discovery (E. Hadley et al., Cell 120, 565 (2005)).

If (2) is premised on skepticism that we may never be able to successfully intervene in our biology to retard aging (to any significant degree) then I think we need to take a “let’s wait and see” attitude rather than a dismissive stance. We are still in the very early days of the genetic revolution.

Those inclined to be skeptical should ask themselves how informed and consistent their skepticism actually is. For example, ask yourself if you think we will find a cure for cancer in this century? I certainly hope we will. And I believe we should invest in such research (even if there is no guarantee we will achieve that goal this century). The rapid progress that is being made with identifying the genes implicated in different diseases, and with experimental interventions like gene therapy, lead me to believe that significant breakthroughs will be made this century in terms of mitigating the natural lottery of life.

Of course it is hard to predict what will be possible, but I think there is a natural tendency to underestimate what we could accomplish. Just consider where science was back in 1907. And the progress we could make in the twenty-first century will no doubt dwarf the monumental gains made in the past century.

So now ask yourself the question: “Will we be able to successfully intervene in the aging process, so that we can live longer, healthier lives?” Again, I certainly hope so and there is some reason to believe that we could make some headway in this respect this century. The amount of funding we invest into understanding the biology of aging will determine how successful the endeavor to intervene in the aging process will be.

And it is important to realize that even just modest success would yield enormous benefits (something I think we often overlook). According to the authors of The Longevity Dividend, a modest deceleration in the rate of aging, sufficient to delay all aging-related diseases and disorders by about seven years, would yield health and longevity benefits greater than what would be achieved with the elimination of cancer or heart disease (32). So if you think eliminating cancer is a laudable aim, one should also believe that retarding aging by just 7 years is also a laudable aim. All else being equal, there is no moral difference between saving a life and extending someone’s life.

I myself am still working out the details of where I stand on many of these issues. As a prioritarian I believe benefits to those who are worse off matter more. And this is why my primary research has focused on gene therapy (rather than enhancement). However, as a pluralistic prioritarian I believe other things are important as well- such as the magnitude of the benefits of intervention (e.g. the number of disease-free years conferred), the likelihood and severity of the harm of non-intervention, etc. And senescence really complicates the story of trying to determine what the just course of action is, “all-things-considered”. We are all susceptible to aging, it increases our risk of disease and we know, with 100% certainty, that (barring intervention) it will eventually kill us if something else doesn’t first. There are a whole host of important and challenging issues here which moral and political philosophers should tackle.

Those looking for some good sources to read on these issues will find, in addition to the Longevity Dividend article by Olshansky et. al., Nick Bostrom’s "Fable of the Dragon-Tryant" and Aubrey De Grey’s "Life extension, Human Rights, and the Rational Refinement of Repugnance" of interest. And Rejuvenation Research has articles and interviews on these issues. For example, previous issues have featured interviews with Arthur Caplan and John Harris.


Thursday, June 07, 2007

NEJM article on Genetic Medicine

The May 17th issue of NEJM has this interesting piece entitled "The Mixed Promise of Genetic Medicine" by Carl Elliott. Here is an excerpt:

In the early decades of the 20th century, most Americans considered cosmetic surgery to be just a few steps removed from quackery. Many observers saw the desire for cosmetic surgery as a mark of vanity, and physicians tended to believe that such surgery violated their ethical injunction to do no harm. Yet by the end of the century, cosmetic surgery had become a multibillion-dollar business, and it is now an accepted part of mainstream medicine, with its own professional journals and associations. Cosmetic-surgery clinics are sponsored by elite academic centers such as Stanford, Johns Hopkins, and the Mayo Clinic.

....The transformation of "enhancements" into "treatments" is now a familiar part of medicine, of course, and it has been accelerated by medicine's move into the consumer marketplace. Physicians today prescribe drugs to lengthen attention spans, strengthen erections, and smooth out wrinkled brows, even when they are not entirely convinced that what they are treating is a medical need rather than a consumer desire. Many others write prescriptions for conditions that blur the boundary between pathology and ordinary human variability: synthetic growth hormone for idiopathic short stature, antidepressants for social anxiety disorder, and hormone-replacement therapy for the effects of menopause. The line between what consumers want and what patients need has become very hard to draw.

It may become even more difficult with the advent of genetic medicine, which, according to its advocates, promises us even greater control over our own constitutions. Not only will we be able to eliminate genetic disorders, claim the advocates, but we will produce genetically superior people. With the new "liberal eugenics," the genetic lottery will be replaced by a genetic supermarket, and genetic choices will be orchestrated not by an authoritarian state, but by providers and consumers.