The Extremes and In-Betweens of Synthetic Biology

I was recently asked to blog about a conference on Synthetic Biology. Here’s a teaser. You can read the full entry here.

When a cartoon is in the early stages of production artists craft the storyline by creating a series of still images. Those images, referred to as “extremes”, depict characters in their most exaggerated positions and are often used in the final stories as visual hooks and punchlines for the audience: anvils are falling on heads; bodies are magically suspended miles above ground; tears are streaming from eyes. Chuck Jones, who famously created the Road Runner and Wile E. Coyote characters for the Looney Tunes series of animated shorts, was a master of extremes. In the example here, Wile E. Coyote has just suffered his first ever T.N.T. mishap at the hands of the Road Runner. In addition to hooking the audience, extremes can be thought of as caricatures of the characters and plot.

Read the full post here.

Exposing the Ghost Management of Medical Research

Dr. Marc-André Gagnon (Carleton University) and Dr. Sergio Sismondo (Queen’s University) have co-authored an excellent op-ed piece on the Ghost Management of Medical Research. Ghost Management is related, though not the same as Ghost Authorship. Ghost Authorship refers to situations where influential academics or professionals (professors, doctors, etc.) accept authorship credentials on scientific or academic papers that they had little or no part in writing. Ghost Authorship is a process often used by large companies, the most famous cases being pharmaceutical companies, in order to help market their drugs.

This article emphasizes that most of the press on Ghost Authorship has missed the ethical mark, so to speak. Typical analyses of Ghost Authorship involve evaluating whether or not professionals ought to sign onto research they didn’t perform themselves. But Gagnon and Sismondo point out that there is a larger, and potentially more dire, outcome associated with Ghost Authorship, and that is that Ghost Authorship is usually a small part of the overall Ghost Management of Medical research.

Ghost Management often involves creating a highly biased perception of certain drugs, say that a drug has beneficial outcomes, when in fact the underlying research does not support that claim. This is accomplished by flooding the literature with research that is biased, by spinning or burying negative research outcomes, and so on.

Here is an excerpt from the article:

In 2008, research showed that pharmaceutical companies systematically failed to publish negative studies on their SSRIs, the Prozac generation of antidepressants. Of 74 clinical trials, 38 produced positive results and 36 did not: 94 per cent of the positive studies were published, but only 23 per cent of the negative ones were, and two-thirds of those were spun to make them look more positive.

Physicians reading the scientific literature got a biased view of the benefits of SSRIs. This helps to explain the huge number of antidepressant prescriptions, in spite of the fact that, according to a meta-analysis in JAMA in January 2010, for 70 per cent of people taking SSRIs, the drug did not bring more benefits than a placebo. Compared to placebo, however, SSRI antidepressants can result in serious adverse drug reactions.

There we see one of the problems with the ghost management of medical research and publication. Pharmaceutical companies want upbeat reports on their drugs. They design, write, and publish studies that are likely to show their drugs in positive lights – and there are myriad ways to do so. Ghosts sometimes bend the truth, and sometimes even commit fraud, with grave results…[read more]

Here’s what I think: All medical doctors should educate themselves on these issues by first reading Gagnon and Sismondo’s article, then the academic research on Ghost Management (included below), and should give it serious consideration. Ghost authorship might offer the opportunity to pad a CV, but at what cost?

For further reading you can check out these articles published in peer-reviewed academic journals:

Publication Ethics and the Ghost Management of Medical Research (Sergio Sismondo and Mathieu Doucet). Bioethics 24 (2010): 273-283.

Publication Planning 101: A Report (Sergio Sismondo and Scott Nicholson). Journal of Pharmacy and the Pharmaceutical Sciences 12(3) (2009): 273-283.

Medical Publishing and the Drug Industry: Is Medical Science for Sale?.Academic Matters (May 2009): 8-12.

Ghosts in the Machine: Publication Planning in the Medical SciencesSocial Studies of Science 39 (2009): 171-198.

On Exporting Asbestos and Land Mines

This week Canada’s Prime Minister Stephen Harper (an economist by training) defended his government’s position that it is okay to export asbestos to developing nations. In doing so he echoed the justification he offered during the recent election campaign, when he stated that in the case of exporting asbestos he would “not put Canadian industry in a position where it is discriminated against in a market where sale is permitted.” At its core, this justification rests on the assertion that if there is a (legal) market for a product in some corner of the world, then Canadian manufacturers and exporters ought to supply it.

There are obvious political motivations behind Mr. Harper’s decision–he wants support in the province of Quebec where the asbestos is mined–but this kind of justification is more common than it should be. For example, in an opinion piece on the European Union’s decision to ban the import of seal products from Canada, the CBC’s Michael Hlinka (also an economist by training) argued that the ban was “outrageous” in part because there was an obvious market for seal products within the EU.

If anything about these two cases is outrageous, it’s the use of an argument that considers the existence of a market for a particular product as sufficient justification for supplying that market. If you scour the earth you’re likely to find markets, both government sanctioned and otherwise, for almost anything: human slaves, cocaine, asbestos, nuclear weapons, bad mortgage debt, and land mines. The fact that we choose to not supply those markets is an indication that the mere existence of a market is insufficient justification.

In fact, the mere existence of a market, government sanctioned or otherwise, is never sufficient justification for supplying that market. This is because there is an additional consideration that must always accompany the decision whether or not to supply a market, and that is the question of whether or not the market ought to be supplied. In many cases answering that question will shine light on the question whether or not the market ought to exist in the first place.

Take the asbestos case as an example of the kinds of further considerations that must be raised in order to determine if a market ought to be supplied. We know that there is a market for asbestos. We know also that that market exists in parts of the world (India and China) where workers do NOT have the kinds of workplace safety standards enjoyed here in Canada or the US. We know that asbestos, when handled improperly poses serious long-term health risks. Based on these facts alone, we can (very) safely assume that our exported asbestos will cause many people serious health problems into the future.

The same kinds of considerations went into our (and 156 other countries’) choice to ban the production, use, and export of land mines, as expressed in the Ottawa Treaty. There is a market for land mines. Land mines are not handled properly in those markets, i.e they are not removed after use. We know that many people suffer as a result of the use of land mines in those markets.

In the case of land mines, we chose to ban the production and export of related products, despite there being several government sanctioned markets for them.

The Canadian government’s response is that asbestos is safe if handled correctly. Of course, that’s as true for asbestos as it is for land mines.

Knowing that asbestos and land mines currently cause harms to people in the primary markets where they are used isn’t just a problem for the governments responsible for regulating those markets. It is also a problem for governments that choose to export asbestos and land mines to those markets. That’s the funny thing about knowledge–once you’re exposed to it, you’re on the hook for whatever moral dilemmas it poses.

Pretending that “market talk” and “ethics talk” can be compartmentalized didn’t work with the environment, or land mines, and it doesn’t work with asbestos. Market talk might distract some people from their obligations for a time, but it can never eliminate those obligations, or the knowledge that ignoring obligations can sometimes cost lives.

Canadian Healthcare Hashtags

I’ll be blogging and tweeting about issues in healthcare and healthcare ethics (a.k.a. bioethics, clinical ethics), so I thought I’d share some Twitter hashtags that are of particular relevance in those areas. Although the topics will be Canadian focused, they should also hold a general appeal to anyone interested in the topics generally.

For those of you new to twitter, you don’t need an account to follow the tweets. You can go to Twitter’s Search engine and search the hashtags to see how the conversations are going. Here’s an example.

Here’s a link to a great list of Canadian Twitter hashtags related to healthcare, compiled by Laura O’Grady.

I’m duplicating her list here (Blogs have a strange way of disappearing):

Canadian healthcare technology hashtags

  • #cdnhealth (Canada healthcare)
  • #hcsmca (health care social media Canada)
  • #hcsmcafr (Canada Francophone Community)
  • #CdnEMR (Canada Electronic Medical Record)
  • #CdnEHR (Canada Electronic Health Record)
  • #CdnTeleMed (Canada Telemedicine)
  • #cdnpacmgt (Canada Patients’ Association Canada Meeting – live tweets of meetings)

Canadian health-relevant hashtags

  • #CHCchat (Community Health Centres chat)
  • #CHA2014 (Canada Health Accord, expires in 2014)
  • #CHC (Community Health Centres)
  • #cmahct (Canadian medical association health care transformation)
  • #cdnpoli (federal Canadian politics)
  • #ABleg (Alberta legislature)
  • #hcbc (Health Care, British Columbia)
  • #onpoli (Ontario politics)
  • #cdnfem (Canadian feminism)
  • #mededuca (medical education in Canada)

General healthcare technology hashtags

  • #hcsm (variations include country abbreviations)
  • #epatient (electronic patient)
  • #ehealth (electronic health)
  • #mhealth (mobile health)
  • #thealth (telehealth health)
  • #EHR (electronic health record)
  • #EMR (electronic medical record)
  • #socialmedia
  • #healthapps (health applications)
  • #mhsm (mental health social media)

General health-relevant hashtags

  • #hc (health care)
  • #sdoh (social determinants of health)
  • #sdh (as above)
  • #vaw (violence against women)
  • #ppd (postpartum depression)
  • #fem2 (An American import for feminism2.0)
  • #poverty
  • #homelessness
  • #pharma
  • #socpharma (social media & pharma)
  • #publichealth
  • #lyme
  • #socinnovation

Health professionals hashtags

  • #mdchat (medical doctors chat)
  • #rnchat (registered nurses chat)
  • #doctorsonline

Hashtags for health-related conferences

  • #CAPO2011 (Canadian Association of Psychosocial Oncology, May 4th to May 5th, 2011)
  • #eHealth2011 (eHealth, May 30th to June 1st, 2011)
  • #NI2012 (11th International Congress on Nursing Informatics, June 23rd to 27th, 2012)
  • #GWIV (Gathering Wisdom IV, First Nations health)

I’ll be updating this list as I come across other interesting hashtags.

(update: Monday June 13, added link to Laura O’Grady’s hashtag list)

For Some, It Takes a Diagnosis to Raise A Child

The DSM-IV is currently being revised, and has come under increasing scrutiny in the decades since its introduction. One of the central concerns is the way mental disorders are now perched on the stoops of normalcy. There isn’t much mental room for people to wiggle in without raising the eyebrows of some in the medical community who are, as Jon Ronson suggests in his latest article “Bipolar Kids: Victims of the ‘madness industry’?”, too quick to diagnose.

One of the central questions raised by the article is whether or not some parents are accepting the diagnoses of overzealous health professionals too quickly. Of course, there is the parallel question of whether or not some health professionals are overzealous in diagnosing children with mental disorders. Ronson suggests that the answer to both of these questions is ‘yes’.

One of the difficulties in evaluating these arguments is wrapping your head around the concept of “normalcy”, a problematic notion if ever there was one. Ronson discusses some of the difficulties with it. Drawing the lines around a particular kind of behaviour is difficult enough in adults, but even more so in children, who are prone to all sorts of erratic and unpleasant acts even on their best days.

As a parent of young children I can think of many situations where I thought for sure my children were drifting into some seriously abnormal behaviour.

If I’d been in a state of mind to record the details I’m sure there were days where I spent the bulk of my waking hours watching my kids kick, scream, and hit–could they be bipolar? Other days (most days if I’m being completely honest) I wonder whether my kids have hearing problems because they seem completely oblivious to my voice. When they do hear me, they usually ignore me–does that mean they have problems with concentration? I’ve seen them pet the cat, lovingly, right before pulling its tail, and marvel at the sight of a delicate spider only to stomp on it ruthlessly seconds later–empathy issues? My kids have problems deviating from their routine, if they don’t get a book before bed they will raise a mutiny–OCD?

Parenting comes with a litany of these doubts, concerns and questions. In the absence of good comparative information, it can be quite difficult to know how to characterize your own child’s behaviour. My wife and I have constant conversations about our children, and what their actions mean in terms of their development, and whether or not it is ‘normal’.

Of course there are legitimate cases of mental illness in children. I would never suggest otherwise. Mental health is one of the most underfunded areas in our healthcare system. Sufferers of mental illness are some of the most stigmatized, and misunderstood members of society. It’s important to pay more attention to mental health, so we can better understand the diseases and disorders and develop more effective ways of diagnosing and treating mental illness. Ronson’s article, and my comments here, deal specifically with a subset of diagnosed children who ought not to have been diagnosed. It would be wrong to suggest that I don’t believe in childhood mental illness, or that I am trying to minimize the importance of mental illness in children, or that I am flippant with respect to mental health in general. I take these issues very seriously, and criticize them accordingly.

Ronson’s article does come off as overly critical of parents. It is unfair to suggest, as I think he does, that parents are much too quick to accept the diagnoses of healthcare professionals. They might be too quick, but they are in a position of acting in the best interest of their children who they believe could be abnormal. In cases where the children are being misdiagnosed, it is the healthcare profession that is confirming suspicions that those parents have. Parents who have a suspicion confirmed then find themselves in a position of having to accept or reject an expert’s opinion. It’s not so easy to reject an expert’s opinion.

We are supposed to be able to trust doctors and psychologists. Parents who are having difficulties coping with their children are certainly in need of resources to help them cope. Experts have the power of institutions behind them, and Ronson’s point is that the institutions are suggesting that a pill is the most appropriate coping strategy. Parents also have to make that decision against the backdrop of a publishing industry of churning out advice books for parents, much of which is based on the same medical literature the healthcare professionals base their decisions on. Rejecting a doctor’s diagnosis is made very difficult because of all of this. It is difficult to pick out systematic problems in the healthcare industry even for individuals whose job it is, like Jon Ronson. For a stressed-out parent it is no easier. For this reason the criticisms Ronson levels against the DSM, and the healthcare industry appear quite justifiable in comparison to his criticism of parents, which seems unbalanced.

These issues suggest that parent’s could use better strategies for coping with difficult children. Part of that resource could be an honest discussion in society, and in the health care industry, about what we should take to be normal. (there’s a very interesting blog dedicated to research related to this, and other relates, issues.) Researchers are doing a great job at categorizing the many different sub-species of psychology that are found in this world, but we seem to be struggling when it comes to deciding which of those sub-species is acceptable. In extreme cases we will be more justified in seeking ways of modifying people’s psychology through medical intervention. But if Ronson is right in arguing that the pharmaceutical industry sees every new sub-species as a potential market, and if the medical community has a difficult time rejecting the views of the pharmaceutical industry (Sergio Sismondo has done fantastic work into the influence that pharmaceutical companies have on the medical publishing industry in articles like this, and this), then there would appear to be a bias towards categorizing new sub-species as abnormal by default. That is misleading and problematic.

A focused discussion of normalcy could have surprising results. Here’s an anecdote. In my experience, when I talk to other parents to find out how their kids behave, there are always two layers to the discussion. At first, there is the veneer of hyper-normalcy–everyone wants their children to be as normal as possible. Kimmy loves school; Peter doesn’t really like bath time.

But when I dig deeper I always reach another place (my unscientific sampling and complete lack of statistical analysis will put this number at 100%, and I am completely confident in it), a place where parents admit to feeling like they’re losing their minds because their children test their limits in ways that were previously inconceivable to them. Kimmy loves school but is obsessed with looking at herself in the mirror before she leaves the house in the morning–I’ve run out of tactics for getting to stop fiddling with her clothes and hair, and last week I had to take a day off of work because she refused to go to school. Peter doesn’t like bath time and we’ve had to resort to one of us closing the bathroom door and holding it shut while the other [parent] chases him, kicking and screaming bloody murder, with a wet cloth just to try to wipe the dirt of of his body, this takes about an hour on a good night, sometimes we go two weeks without bathing him because we just can’t deal with it. It’s hard to get parents to talk about the most frustrating things their kids do. I suspect that some parents avoid having those conversations with anyone but their family doctor. Hearing these stories from other parents makes me feel much better about my own situation, because my kids are the similar. (Note to publishers: If there’s a book out there about all the horribly frustrating things that kids do, and the many ways that they can drive parents to the brink, my wife certainly never received it as a baby shower gift; that book would have been tremendously rewarding, and comforting to a new parent.)

Would a discussion about normalcy lead to massive changes in the DSM? Perhaps not. But it could help temper the urge to find a medical explanation for problems that could be dealt with in other ways. The border between normal and abnormal might legitimately shift. And that could help legitimately reduce the number of children that are misdiagnosed with mental illnesses.

Parents of children who have been misdiagnosed are currently coping with trying to make their kids normal by means of medications their child doesn’t need. But the problem lies with the misdiagnosis. It would be too easy to blame just parents, or just the healthcare industry. Misdiagnoses are a problem in all areas of healthcare, a complicated one to be sure, and also a dangerous one. It has been suggested that socioeconomics plays a role in mental health misdiagnoses, and misdiagnosing a mental illness can have life-threatening effects.

Ronson‘s article raises important issues and is well worth reading. The prospect of there being many misdiagnosed children out there is troubling. In those cases, it shouldn’t take a diagnosis to raise a child.

 

Update: June 8, 2011 – Added reference to What Sorts of People