Should taking part in medical research become a public duty?

I would be against that, of course. But a more subtle point was made at the link I posted: "He wants the regulations to be changed to assume patients want to take part in studies, to speed up the process for researchers. "The consent regulations are too rigid. If I was asked to do jury service, I wouldn't have to give fully informed consent," he added. "
That seems fairly reasonable.

Ideally there should be good info campaign to get people to freely participate in medical research where the results would be pooled for "open medicine".

?
if you want to get litteral then I guess lifespan increased a lot because of medical research so it makes the statement true, in a crude way. unless you are under 30 then yes, the statement is false yeh

ugh. sheer fucking lunacy.

I think it's more fun to compare this hypothetic public duty to "we should all use seatbelt/get children vaccinated/etc", less exagerated = easyer to imagine how it could be applied in the real world, what kind of problems would come with it (privacy issues, intellectual property rights vs global commons , what else etc)

In this week's BioNews, we report that the UK Biobank project is gearing up to begin recruiting volunteers - half a million of them. Potential participants aged 40-69 will be randomly selected via health registers, and asked to take part in the study. If they consent, they will need to give up 90 minutes of their time to have blood and urine samples taken, simple measures such as weight and blood pressure taken, and to fill out a detailed lifestyle questionnaire. The scientists will then use medical records to track their subjects for 20-30 years, with the aim of teasing out the complex relationships between genes, common diseases and factors such as diet and exercise.

The project has attracted criticism from some scientists, who think
that its dependence on health information from family doctors, and
lifestyle information provided by the participants themselves could
produce unreliable results. Others have expressed concern over its
costs, and the potential for misuse of the information gathered. To
address privacy concerns, all the data collected will be anonymised, and
no health information - good or bad - will be given back to
participants. This means that there is no direct benefit to those taking part. Is it unrealistic to expect that potential participants will act so altruistically, especially since the research is setting out to provide answers to such vague questions?

Those who volunteer to take part in medical research usually do so
because they need a bit of extra cash, or because they are patients with no other treatment options. But why should people agree to give up their time to contribute to a project with no immediate direct benefits - especially those in their sixties, who are least likely to be around when Biobank eventually bears fruit? Given the lack of an obvious incentive, is there instead a 'moral duty' to take part in such research, as argued by the ethicist John Harris in a paper published last year (Journal of Medical Ethics 31 (April 2005), p242-247)?

Harris says that anyone living in a society that has benefitted - or expects to benefit - from medical research has a 'positive moral
obligation' to participate in it. This conclusion is based on two
principles - that of doing no harm, and that of fairness. In other
words, by not taking part we may deny others, including our descendants, the chance of future treatments or knowledge that could improve their health. What's more, we shouldn't expect a 'free ride' by leaving it to others to take part in research that produces medicines we all want access to, should we ever need them. He concludes that as long as participants are fully informed, and safeguards against wrongful use of data are in place, then people are morally obliged to take part in projects such as Biobank.

Perhaps most of the 500,000 people chosen to take part in Biobank
will agree, and feel that helping others and 'doing their bit' are good enough reasons to participate, providing it causes only minor
inconvenience. The project may even help foster a new attitude to
medical science - that in order to reap the benefits of research, we
must be prepared at least to support it, both as a society and as
individuals.

- Dr Jess Buxton, genetics editor, BioNews

there have been less drinking and driving around here for the past few years, in good part due to an efficacious public education campaign. Same thing could be made here.

I think the last sentense of that article :
"The project may even help foster a new attitude to
medical science - that in order to reap the benefits of research, we
must be prepared at least to support it, both as a society and as
individuals." is where it's at.

I see it as a way to express oneself. I'm not about being forced into medical research by a police.

And im studying in a related field.

If you remove this entire line of argument from his original framing of the question, then it is reduced to an argument about how people "should" view participation in medical trials. He posits the current attitudes toward them as being determined by something he called a "yuck factor".

I think he is wrong about the source of reluctance to participate in medical studies. Studies take, at a minimum, a commitment of many hours a month. They often demand behavior modification or monitoring. In the case of drug studies, there is no guarantee of a therapeutic benefit; not only might you fall into the placebo group, but if you do not, the treatment you are given may have a high instance of hazardous side effects, or little therapeutic benefit compared to the usual and standard treatment (that you are obviously not receiving).

What all this boils down to is that any single participant in any medical study is faced with known costs, unknown costs and unknown benefits. All that is guaranteed is that there are costs. This isn't a "yuck factor", but a sound analysis of the facts.

Only those who are highly motivated by altruism, or desperate for even the hope of a therapeutic benefit, are likely to accept such a deal. That is not ever going to be a preponderance of the population. Yet, somehow, studies do manage to find participants and get done.

I suppose Sebastien could be arguing for a massive PR campaign to raise public appreciation and esteem for medical studies. OK. Fine. However, I firmly predict that unless and until a more tangible set of benefits can be guaranteed to every participant in such studies, that the effect of such a campaign will be both temporary and not very signifigant, soon subsiding back to present levels.

The guinea pig credo of folks that I knew was "no drug, and no sleep," i.e. drug studies and sleep studies tend to fuck you up to where it's not worth the money.

There must be lot of low risk studies who don't require much time or trouble in general.

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I'm with you Abu on the dislike of contributing to drug companies' profits . Research I would encourage should use Science Commons licencing http://sciencecommons.org/

And those would be precisely the easiest ones to find participants for. I don't think low-risk studies that take hardly any time or trouble are the ones that are begging for people. More likely they are begging for funding because they are not tied to potential profits for private companies and public monies are nowhere near sufficient to fund all the studies that would be nice to conduct.

didn't know where to put this, but there are a couple recent papers about this urologist's blatantly unethical (at least by the standards of today) study of early prostatecomy/orchiectomy vs ...well, versus nothing because there was no control, in homeless men from the 1950s. it's always shocking to thinkthat things like this, tuskegee, and the guatemalan syphilis study happened only a generation or two ago

http://ajph.aphapublications.org/doi/pdf/10.2105/AJPH.2013.301446