Open access neuropsychopharmacology

All 134 chapters of Neuropsychopharmacology: The Fifth Generation of Progress have been made available for download. Two of them concern legal and ethical issues:

• Debra A. Pinals & Paul S. Appelbaum. Ethical Aspects Of Neuropsychiatric Research With Human Subjects. Chapter 35 [PDF file]
• Paul Lebe. Regulatory Issues. Chapter 36: PDF file

The American College of Neuropsychopharmacology also includes in their archive of publications Psychopharmacology – The Fourth Generation of Progress. It has a piece by Lisa S. Parker and Elizabeth Gettig on Ethical Issues in Genetic Screening and Testing, Gene Therapy, and Scientific Conduct.

Kudos to the College and the authors for giving open access to this tremendous resource.

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Where does informed consent go when you open a purse?

Following a paper published in Fertility and Sterility, the New York Times weighs in with this: As Demand for Donor Eggs Soars, High Prices Stir Ethical Concern.

The surprise for me was how Hastings Center ethicist Josephine Johnston characterized the problem: she thinks the lure of a big payment can cloud informed consent.

The real issue is whether the money can cloud someone’s judgment… We hear about egg donors being paid enormous amounts of money, $50,000 or $60,000… How much is that person actually giving informed consent about the medical procedure and really listening and thinking as it’s being described and its risks are explained?

Informed consent can’t happen when a lot of money is involved? Johnston’s assumption needs empirical evidence to back it up. Is it true that women are so tempted by money they become incapable of making an informed decision?

Informed consent is a legal concept, so its meaning varies by jurisdiction. However, at its core it involves the subject of a medical intervention only agreeing to the procedure after considering its purpose, risks, benefits and uncertainties – and the availability of alternatives.

It’s something you’ll almost never see in medical dramas like House, where doctors  – not patients – make the decisions.

There are occasions when people are believed to be incapable of providing or withholding informed consent. This happens when patients are unable to make judgements about their care, either because of immaturity, cognitive infirmity or duress.

Since youth and mental health are not at issue, perhaps Johnston is thinking about duress. But since when is a profit incentive equivalent to duress? Where are the women held to ransom by student loans, who feel bad about selling eggs but do it anyways?

While it may be common for us to think that decisions we would not make signal an inability to make informed judgements, the question of a patient’s capacity to consent should have nothing to do with whether or not we think the decision is a good one.

A principled approach also recognizes the type of procedure should make no difference at all to the measurement of a person’s capacity to give informed consent. This just means that if a person is capable of giving informed consent for one medical procedure, they are capable of doing so for any. The stakes don’t matter. A woman who can give informed consent for a vaccination can give or withhold informed consent for a kidney donation, sex change, blood transfusion, or for-profit fertility treatment.

Also, why shouldn’t people consider facts external to the medical merits of a procedure? How does this threaten informed consent? Consider the following examples:

1. When a person worries that they might lose their job if they don’t undergo a procedure, does this mean they lose the capacity to make informed consent?
2. When a person is worried they might lose weeks of work if they undergo a procedure, does this mean they lose the capacity to withhold informed consent and refuse treatment?

Keeping in mind the second example, consider how nobody would question a woman’s capacity to consent if a she decided to not donate her eggs because it cost her too much time and money.

How can it be that women lose the capacity to make or withhold informed consent when they think about monetary advantages, but keep their ability to decide when they think about monetary disadvantages?

The lesson we should take away from this is simple: the capacity to give or withhold informed consent doesn’t go away when a person has access to extra information about incentives and disincentives.

If there are good objections to the sale of human eggs, they don’t have anything to do with informed consent.

(Hat tip to Pure Pedantry for mention of the NYT article. However, he is wrong about the law in Canada and the UK. In both jurisdictions, egg sales are illegal. In Canada, it is a serious criminal offense to buy human eggs. In the UK, while egg sales are illegal, donation with some compensation is permitted.)

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Exploding folk beliefs to opt out of human nature

Today, two articles from the Washington Post tell us how economists and doctors are using behavioural psychology to make the world a better place.

The first involves the use of intuitions in making public policy – while my own research interest concerns the involvement of moral intuition in political and legal decision-making, scholars of behavioural law and economics are fascinated by intuitive calculations of costs, benefits, risks and distributive fairness – among other things which challenge the assumption of rational economic actors.

Paul Rubin says evolutionary psychology can tell us when politics goes off the rails due to errors in ‘folk economics’ – which he defines elsewhere to be “the intuitive economics of untrained persons.”

Public policy pays surprisingly little attention to evolutionary psychology. Yet there are many human intuitions and behaviors that influence contemporary policy issues — sometimes in ways that are no longer useful or perhaps even harmful to humans flourishing. These intuitions are sometimes referred to as “folk economics,” and one area in which they often emerge is the international economy. [emphasis added] …

As products of evolution, humans cannot help but be born with certain biases. But we are not condemned to this evolutionary programming; we can identify the biases and recognize when they lead us astray in the modern world.

• Evolution, Immigration and Trade, by Paul H. Rubin.

I don’t know why it should be surprising that public policy ignores evolutionary psychology, but I do agree that we are better off when we know intuitions are misleading us. How this can be practically applied to winning policy arguments remains an open question. Telling someone they are being misled by their evolutionary origins is bad rhetorical strategy – particularly if your opponent doesn’t think much of evolution in the first place.

The second article is a piece on the usefulness of body language training to doctors. The sell: presenting appropriate cues helps create a rapport with a patient, builds trust and fosters communication, therefore aiding diagnosis and saving time.

• New Doctors Develop an Old Skill: They Call It Clinical Empathy, Previously Known as Bedside Manner by Sandra G. Boodman

The two stories offer very different ideas about why we should learn about the implicit reasons for our behaviour:

1. An economist hopes education about the evolutionary source of bias will strip away irrationality in discourse. Opting out from aspects of our human nature allows us to excise cognitive disadvantages.
2. Doctors are being taught techniques to benevolently manipulate patients. Opting in to aspects of our human nature allows us to take advantage of behavioural cues.

I’ll go out on a limb and guess that opt-out strategies are less successful than opt-in strategies. It’s easier to take advantage of human nature than it is to escape it.

Sometimes, we might not even know when the implicit causes for our behaviour are good for us, and whether we should opt-in or opt-out. For an example of this, take a look at a recent study which invites the question: Is it a good thing when researchers implicit ethical values guide scientific studies?

• Inmaculada de Melo-Martín & Kristen K. Intemann. Can ethical reasoning contribute to better epidemiology? A case study in research on racial health disparities 22:4 (April, 2007) European Journal of Epidemiology 215-221.

The authors argue value judgements are unavoidable and essential to good epidemiological research.

Scientific training should prepare scientists to engage in ethical reasoning not only because it will make them more responsible human beings, but also because it will make them better scientists.

It makes sense that if there are epistemic benefits to having research methodologies guided by implicit ethical judgements, we should opt-in. It remains to be seen, however, whether there are genuine scientific advantages to implicit ethical judgements. The authors acknowledge this when they mix their opt-in conclusion with an opt-out qualification, and say researchers’ implicit ethical judgements need to be exposed to critical assessment. Either way you spin it, though, ethics training for medical researchers is a good thing.

For more discussion of that paper, see the commentary:

• David A. Savitz. Delimiting the role of ethical reasoning in epidemiology 22:4 (April, 2007) European Journal of Epidemiology 211-213.

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US Health Law: Genetic Information Nondiscrimination Act

The National Human Genome Research Institute has an excellent compilation of legislative information related to the passage of the Genetic Information Nondiscrimination Act (GINA 2007). It includes webcasts of testimony, a useful chronology, and links to the Library of Congress archive of legislative information – THOMAS – which uses an interface that Canada’s Library of Parliament would do well to emulate.

The full title: A bill to prohibit discrimination on the basis of genetic information with respect to health insurance and employment.

• House Resolution (H.R.) 493
• Senate Bill (S.) 358

The merits of the legislation aside, am I the only one that thinks ‘nondiscrimination’ is a clunker of a word?

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Google Outbreak: mapping disease with science and social networks

I’ve just finished Ghost Map, a book by Steven Johnson. It tells the fascinating story of John Snow, a doctor who mapped the 1854 cholera outbreak in London, and used his results to identify the Broad Street pump as the source of the disease. Those maps can be found here, and a short video interview with Johnson about his book.

A modern equivalent can be found in the use of Google Maps to chart illness on the Who is Sick website. (Hat tip to BoingBoing.) You can see the same idea implemented at Pandemic Watch, although it has no content.

This idea might be familiar to those who read this Nature article, which uses Google Earth to chart the avian flu. As the article is locked behind a paywall, here’s a link to a description of the project.

According to a EurekAlert press release today, a more recent venture maps the H5N1 virus with more detail.

The researchers used the novel technology to chart the spread of H5N1 through Asia, Indonesia, the Middle East and Europe by various hosts, including its transport by specific orders of birds and mammals… They also used the supermap to track key genetic traits prevalent in some avian flu genomes that appear to confer the ability of H5N1 to more readily infect mammals, including humans, he said.

The title of the paper is not mentioned, and the journal is behind a paywall, so I offer instead a link to a webcast about the results. Particularly impressive is the use of data from National Institutes of Health within the map.

Up next, perhaps a Google Outbreak for bees: could apiculturists (bee-keepers to the rest of us) charting Colony Collapse Disorder help solve the mysterious disappearance of bees?

Update: Effect Measure now posts on this.

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Decision-making by aging brains

A generation from now, in 2050, the people older than 65 will outnumber than those younger than 15. So says a press release notifying us of a survey article by Ellen Peters et al. (Perspectives on Psychological Science). It suggests that since aging requires crucial decisions related to end-of-life care, it is important for researchers to study the effects of getting old on our ability to make these decisions.

As someone interested in neuroethics and health law, I can spot two areas of research that are begging for grant proposals:

• An investigation into the way aging brains make moral decisions.
• Research into the ability of aging brains to provide informed consent for medical care.

These touch upon important issues of moral psychology and autonomy, so the expertise of experimental philosophers might be useful to bridge that of neuroscientists and bioethicists working in this area.

Follow-up: Raising similar issues, a new study in Nature Neuroscience says older brains are less able to anticipate the risk of loss.

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Open Medicine launched: ethical journal publishing

Open Medicine opened for business today. It is a peer-reviewed open-access medical journal, and its launch made national headlines in Canada. Why? Because its publishers are defectors from editorial staff of the Canadian Medical Association Journal: editorial independence was the main issue of contention. The dispute between the Canadian Medical Association and the CMAJ editors (2 were fired, 15 resigned in protest) is chronicled in this CBC backgrounder. The British Medical Journal has coverage here and here.

Threats to the integrity of scientific and medical journals are not unique to the CMAJ. Consider the row between The Lancet and Reed Elsevier when people began to question the ethics of the publisher hosting arms fairs – but for weapons, not limbs. The CMAJ links to a PDF of the Open Letter from The Lancet’s Editorial Consultants to Reed Elsevier. Consider also, the problem faced by the New England Journal of Medicine and other journals in their attempts to assert independence from pharmaceutical companies.

Is open access publishing the way to solve these problems? Open Medicine thinks so, and uses Open Journal Systems, publishing software made available by the Public Knowledge Project under a GNU General Public License. The project is a collaboration between the Faculty of Education at the University of British Columbia, the Simon Fraser University Library, and the Canadian Centre for Studies in Publishing at Simon Fraser University.

The journal’s first editorial presents a powerful argument for open access to medical information. It should not be ignored.

Medical knowledge should be public and free from undeclared influence. When possible, it should be free for those who apply it. Since people’s lives depend on it, that knowledge must be filtered several times before it is ready to use. Studies need to be peer reviewed, to have their statistics analyzed, their content edited, then copy edited, then published quickly for as wide an audience as possible. The prospect of having a high-quality source of information that held true to these principles but was also free and globally accessible was impossible to imagine 20 years ago. Paper and postage are simply too expensive. The landscape is different today. An ideal medical journal — a truly open one — is not only within our sight, it is within our reach.

To open access journal editors everywhere: Thanks, and good luck. You are the vanguard.

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