a partial response to points made about my genetics post

James Buchanan posted a well argued response to my (deliberately) provocative posting on genetic testing.

I’ve been silent due to illness (ugh) and am still not better but I can, at least, make some points of clarification at this stage. So, until next week, when I intend to discuss his rebuttal to the geneticists I work with and who know far more than I, I will clarify some points and highlight how certain circumstances here in Sweden might not accord with James’s arguments. But, just to be clear, I am not saying he is wrong.

(1) Only one of the three main costs of genetic testing is falling.
I don’t dispute this. However, the graph I saw a few weeks ago displaying the whole genome sequencing (WGS) assay cost in Swedish Krone was one of the most mindblowing cost graphs I have ever seen. Assay costs have fallen in what looks like a reverse exponential curve – indeed the geneticists told the audience that WGS is now the most cost-effective one to do and there is simply no ethical or cost reason to do the two older most limited tests. Now, of course, labour costs are large and can easily offset even large increases in other costs.

However, the costs of counselling and of establishing exactly what patients want and not want to know will also come down. This is because we don’t intend to carry on doing these the way we have to date been doing them. We intend to use discrete choice experiments to establish:
(a) What risks generally patients find acceptable
(b) How these acceptable risks vary depending on the disease the patient is genetically susceptible to (and whether anything could be done about it, should the patient contract the disease).
Clearly, such research is at an early stage, not least because so much DCE good practice is yet to permeate health economics. Yet there are already a number of large studies underway here and being led by Uppsala, not least the Mind The Risk project.

So, at this stage, I concede James’ point, but I think game-changers in both genetic WGS and DCEs are coming.

(2) James believed I thought the difference in costs would decrease.
Indeed I did think that…primarily…but I keep thinking there must be occasions where costs go the other way. I’m woozy and need to think some more on this! And his point concerning the “fragmentation” of care when newer (Say) anti-cancer treatments are used is exactly an example of what worries me – I raised the possibility of subgroups in society having different ICERs when individual utilities are used in 2010 and it’s only a matter of time until subgroups not “accepted” as valid by the public fall on opposite sides of the cost effectiveness threshold. This is analogous (I think) to the personalisation of genetics. Note I do NOT believe this to be an argument against individual values – I think the threshold is badly out of whack (see my final paragraph below).

(3) My reading of Terry’s blog post is that he is mainly talking about using genetic information to enable more precise cancer treatment (again, happy to be corrected).
No I just used cancer as an exemplar, am very aware of other uses.

(4) & (5) Concerning ICERs and economic evaluation
Looks like we broadly agree here!

A final point I would make is to re-iterate that the sheer number of economic evaluations required, in a genetics world, is not going to be supportable. I don’t believe the taxes-funding-spending nonsense will survive for much longer (see my post from last week) and in a world that recognises that real resources are far more abundant than we were led to believe, the public will decide that simpler rules for making decisions at the margin are a much better use of resources than paying health economists doing economic evaluation.

However, at the end of the day, I was employed by the Centre for Research Ethics and Bioethics for my DCE/BWS expertise – I am learning about the bioethics side from my colleagues so I will keep listening and learning 🙂