The votes are in…

… and so is stem cell research. Those who know me (and/or read this blog) will know I’d be pleased.

Before the Patterson Bill was passed, I was going to post about how I wonder if the change in Labor leadership will mean anything for science. It may not mean much in terms of votes, but it does give Julia Gillard a bit more attention when she makes her statements as Labor’s health spokesperson:

They are saying surplus eggs from IVF processes and I think that is the best place to start. Obviously there may be future issues about donation but I don’t believe we are there yet and we should see if the supply of surplus eggs from IVF processes is sufficient.

I agree with this. Avoiding egg donation directly from women is definitely to be avoided: Woo-Suk Hwang has taught us that. All the ethics committees in the world can’t stop subtly coercion of junior, female staff. It’s a sad inevitability of humanity. And the risks of egg donation mean that they should only be given freely.

So yes, I’m pleased. In August, I posted about three areas where I think Australia is lagging behind the rest of the developed world. Two out of three of those areas have improved tremendously. Now all we need is a better strategy to slow climate change and we’ll be set. Well, not quite, but we’re on the right track.

Dr Net

I’ve heard of people that self-diagnose based on information from the net, but a couple of recent incidents really made me aware of how dangerous it can be.

One friend called me up and asked me if I knew anything about a particular treatment. The treatment involved radiation, so it sounded pretty scary to her and she didn’t want to agree to it without looking into it. For reasons unclear to me, her specialist didn’t give her any background information on the treatment. Both of us found that the information on the internet was scant, limited to alternative therapy sites.

Another friend casually mentioned that she had “worked out” what was wrong with her toddler when she had a sudden screaming attack after her bath. She’d put the symptoms into Google and made a diagnosis based on what came up. It was at night and not quite urgent enough to go to Emergency, she said. But she didn’t even go to the doctor the next day.

Information on the internet is varied. Some sites are for practitioners and have disclaimers for patients. Type “cancer cure” into Google and lots of dodgy stuff comes up, including sites selling Laetrile, which is toxic. Generally if you put in a specific disease you’ll find organisations dedicated to it with good quality information. But typing in symptoms brings up a hodgepodge of different sites, and it can be hard to tell the good from the bad.

Not to mention the concern of self-diagnosis, regardless of the source. One of my friends who works as a medical receptionist told me she’s “had cancer six times”. That is, she’s thought she had it.

Of course, the increased access to information that the internet obviously provides increases the scope of this problem. Perhaps the general public needs better medical education to combat this, since something is obviously lacking in medical care. Probably access, sufficient explanations of diseases and treatments, and just plain old reassurance.

What was I consenting to again?

At 3:52 PM, PmH said…
It seems unreasonable to expect anyone to be capable of signing an informed consent form unless they understand the planned test, the risks and the legal remedies.

PmH quite rightly pointed out that I basically ignored one of the important points of this article:
Guinea pigs do sign “consent forms” that detail the risks; but Tom Edwards, a 21- year-old from Oxford who took part in another Parexel trial, pointed out that his form was 15-pages long. He said he felt “pressured” into signing the form and eventually did so without reading all of it “because I felt like I was slowing everyone down”.

I don’t think anyone could have predicted the side effects of TGN1412, but even ordinary trials can be fairly hazardous. Participants need to understand the potential risks and feel that they can refuse to take part if they feel the risk to be too great — this is basic informed consent.

High school science leaves most of the population ill equipped to deal with a 15-page form which was most likely written in the worst combination of science lingo and legalese imaginable. Tertiary science leaves scientists ill eqipped to write consent forms that the general population can understand, and therefore give informed consent to. Either way, the onus lies on science educators to lift their game and level the playing field somewhat. Obviously there is a need for technical language, and every type of specialty, whether in philosophy or physiology. But there’s a time and a place for it.

On the other hand, the average citizen could use a better grasp of science. The same people who don’t understand consent forms also don’t really understand the science they read in the newspapers, or its implications to their lives (unless the particular science journalist is better than average). Their way of verifying scientific hearsay is to go through their catalogue of anecdotes until they find a situation that confirms or denies the report. And they believe that intelligent design is a plausible alternative to evolution.

For its own good, scientists need to teach better and communicate better; really these are both the same thing.

Spotlight on cystic fibrosis

This article was originally published in issue 4 of the MMIM newsletter.

Associate Professor John Wilson began his career with a science degree, followed by a medical degree and a PhD. After working in the United Kingdom for two years, he returned to Australia and is now the head of the Cystic Fibrosis Service, Department of Allergy, Immunology and Respiratory Medicine at the Alfred Hospital, Melbourne.

Cystic fibrosis (CF) is a life-limiting condition characterised by respiratory failure and malnutrition. Although it is caused by an abnormality in a single gene, the expression of the abnormality is highly variable. CF patients’ symptoms range from negligible to severe lung impairment. It follows that other factors must affect how the disease progresses. Wilson is particularly interested in how factors such as gastroesophageal reflux, nutrition, and bone density interact with the cystic fibrosis gene. For example, genes encoding proteins involved in the manufacture of advanced glycation end-products (AGE) are important in diabetic nephropathy, but they also appear to play a role in causing early kidney failure in CF.

Wilson says that MMIM is “very powerful because it helps us direct our research”, which saves time and money by “avoiding fishing expeditions” and ultimately helps his patients. Because Wilson and his colleagues are trying to balance many factors in order to optimise treatment, computer-based analysis is essential. “Constructing models helps us weight the importance of different factors,” Wilson explains.

For example, Wilson’s research team found surprising interactions between the most common mutation of the CF gene, ΔF508 (either one or two copies), and bone mineral density (BMD). Carrying this mutation and being male are “powerful risk factors” for osteoporosis, independent of pancreatic disease and vitamin D malabsorption. Because osteoporosis is considered to be predominantly a disease of women, this means that we need to be “extra-vigilant” about BMD screening for men with CF. It also has implications for children with CF, who should have BMD augmented to prevent osteoporosis before it occurs.

This type of work, Wilson says, “will improve the health of Australians” – both with CF and with other conditions. In his role at the Alfred he still sees patients regularly, and is committed to practical research that will “get to the clinical interface” and make a real difference for patients. His approach is to address current clinical guidelines with up-to-date research: it is always important to “evaluate evidence and challenge icons” and determine whether there is a better way to approach treatment.

His overall plan for management of CF is to create an electronic health record, which can be “interrogated” to retrieve information, and “injected” with management plans, creating individual goals for therapy. Treatment can be accelerated if goals are not being met, or wound back if they are ahead of schedule.

Some of the most dramatic advances in CF survival rates in the last two decades have been relatively simple changes, such as an increase to twice daily physiotherapy, and a shift from postural drainage (which causes reflux) to other techniques to clear airway secretions. By studying the current techniques and analysing them statistically (with the help of the MMIM database), Wilson and his research team can make further advances that make a real and timely difference to patients.

Still in the Stone Age down under

Debate is heating up in Australia about the use of mifepristone (RU-486) for medical (as opposed to surgical) abortions. Tony Abbott, who is clearly highly qualified to have an opinion about (a) medicine (he has an Economics/Law double degree) and (b) women (he quite obviously isn’t one), has decided that he should be more cautious than the Australian Medical Association, the Royal Australian and New Zealand College of Obstetricians and Gynaecologists, and the World Health Organization and keep mifepristone off the shelves in Australia. Well, that’s his story, anyway. Unfortunately for Mr Abbott, people aren’t stupid and are quite able to see that his views on mifepristone are just thinly veiled anti-abortion views (which go hand in hand with his anti-stem cell research views).

All research and medical opinion points to mifepristone’s safety and efficacy in inducing termination, when combined with a prostaglandin analogue such as misoprostol (which is already available in Australia for other uses). From the reading I’ve done, I can’t see how medical abortion is any less safe than a spontaneous abortion. Both can lead to complications, such as incomplete abortion, which can be taken care of with medical help.

It’s insulting to doctors for Abbott to suggest that they would not be able to deal with the complications that can arise. If they can deal with a miscarriage, they can deal with a medical abortion too. And it’s insulting to suggest that they would prescribe mifepristone unwisely. Any doctor prescribing it would, of course, be there to deal with any adverse effects, same as they would be for any medication they prescribed. Rural doctors, in particular, should be offended at the implication that they can’t handle complications of pregnancy, when they can probably deal with them better than some over-specialised urban doctors. Should they be recommending that all female regional inhabitants relocate to cities for pregnancy care?

Abortion isn’t nice or pleasant but it’s a reality that some women find themselves facing for a variety of reasons. Whether the underlying cause is their own stupidity or the cruelty of rape, no woman should find herself facing the alternative of an unsafe abortion, or an unwanted pregnancy that will produce an unwanted child, who might never receive adequate care or love. And medical abortion makes it easier — some might say too easy, but I feel that the option needs to be there for women in remote areas, or from communities where abortion is not acceptable, and going to the doctor for a pill and pretending that you’ve had a miscarriage might be your only option.

It’s just mind-boggling that this decision is in the hands of one man who’s clearly biased, rather than where it belongs: in the hands of each individual woman.