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So, some of you may recall my rather negative comments on a UK national plan to make NHS medical records which are not even fully anonymised available to not only research universities, but also – totally unnecessary from a medical research standpoint – private industry in the pharma and insurance fields. This in spite of the fact that it takes just a few snippets of information combined with a medical sample to correctly trace the individual from whom the sample has been taken these days. Former posts are here, here and here. A very recent report in the Guardian is here.
Yesterday, the BBC reported that the plan – which unnecessarily jeopardizes the interests, integrity and liberty of masses of people, besides putting them at risk of being discriminated against for health reasons – has been delayed, since the NHS "has accepted the communications campaign, which gives people the chance to opt out, needs to be improved". That is, the "campaign" consisting of no information at all whatsoever, and which was made public only thanks to some vigilant bloggers – especially MedConfidential. The "campaign" consisting of the NHS apparently deliberately making its very best to hide from the public that they have the unconditional right to opt out of the whole scheme and how they may go about claiming that right. No wonder that the lead-heavy players in the field such as "The Royal College of GPs, the British Medical Association and patient watchdog Healthwatch England have all voiced concerns".
The plan is to devise an information campaign, which – lets hope – actually informs people about their right and gives them as easy access to the form to fill out to opt out as they facilitate the sellout of patient medical details and records. By August it will all be ready to roll-out the system, the responsible ones promise. I believe it when I see it.
Just in case they don't: here's once again the link to all you need to opt out. If I lived in the UK, I certainly would fill out and hand it in immediately! The inconsiderate hurry, carelessness and obvious money-hunger of the forces having pushed this setup into place inspire everything but confidence and trust. I'm sure there will be more to come eventually.
Showing posts with label medical research. Show all posts
Showing posts with label medical research. Show all posts
Wednesday, 19 February 2014
Sunday, 19 January 2014
UK Set to Sell Out it's Population's Medical Data and Records to Private Industry and Health Insurers
I posted almost a year back about a then apparently more restrictive, but to my eyes still outrageous, move of the UK government to frivolously open up a genomic database created out of the medical records and samples collected within the NHS in the course of normal health care (for diagnostics, safety and quality assurance purposes) for research not only by public research institutions, but also private companies in the pharmacological and medical technological area. Now, if this lengthy account is to be belived, it transpires that, apparently, the data base, which is due to be launched later this year, is not only genomic, but simply a general health research database created out of the entire medical history of the entire NHS "cohort", complete with rather specific personal information. It will not contain straightforward identification of individuals, but even government spokespeople admit that the "pseudo-anonymization" planned to be applied allows any research institution with access to a lot of informationto re-identify individual people, not even mentioning at all the recent discovery that just a little bit of genetic information together with publicly available online information can be used to trace people who have anonymously donated tissue to research.
But that's not the end of it: among the players which will be eligible to apply for access to this goldmine for – true – advanced medical knowledge and – equally true – the health business opportunity of the century are – hold your breath – health insurance companies. Yes indeed, the very same one's who are widely known to do their very best to exclude those people who are in most need of their product from buying it and to refuse paying out compensation if they are ever accidentally let in. These are the ones who the UK government and the NHS experts behind the new Health and Social Care Information Centre (which will be responsible for handling the database and provide the access) think are suitable parties to be helped to identify the heath frailties of individual persons, their children, family and so on. Mark Davies, who is something as peculiar as the "public assurance director" (let that one roll around your palate for a second, doesn't it taste a bit like "top blinker"?) of the HSCIC, pressed by reporters, admits a "theoretical risk" – apparently having never entertained the obvious thought that for an insurance company, identifying people's health risks as part of the general process mentioned above is a rational business procedure. If it's possible (and it is - even more easy than admitted by Mr. Davies), it will be standard procedure for a number possible purposes – everything from even more effectively than now screening people in need out from health insurance or compensation payment, to restructuring existing insurance schemes to more effectively weed out the potentially unprofitable customers by having no product that suits them. The "assurances" about transparency ring hollower than ever before as Julia Hippisley-Cox speaks of the right of people to be able to know who sits on their data and a "clear audit trail". Won't matter much when coverage of your recent surgery bill is being refused, will it?
Not very surprisingly, there's been criticism and debate, but the UK government seems to entertain no plan of setting a few sensible safeguards for those ordinary people who are supposed to profit from the scheme in place. Such as forcing private industry to commission any research using the database from public research institutions – thereby making redundant the reckless move of transferring data into the commercial secrecy protected hands of these far from public interest oriented parties, where as critics point put, no one will know where they will then go or how they will be used.
Read more here.
But that's not the end of it: among the players which will be eligible to apply for access to this goldmine for – true – advanced medical knowledge and – equally true – the health business opportunity of the century are – hold your breath – health insurance companies. Yes indeed, the very same one's who are widely known to do their very best to exclude those people who are in most need of their product from buying it and to refuse paying out compensation if they are ever accidentally let in. These are the ones who the UK government and the NHS experts behind the new Health and Social Care Information Centre (which will be responsible for handling the database and provide the access) think are suitable parties to be helped to identify the heath frailties of individual persons, their children, family and so on. Mark Davies, who is something as peculiar as the "public assurance director" (let that one roll around your palate for a second, doesn't it taste a bit like "top blinker"?) of the HSCIC, pressed by reporters, admits a "theoretical risk" – apparently having never entertained the obvious thought that for an insurance company, identifying people's health risks as part of the general process mentioned above is a rational business procedure. If it's possible (and it is - even more easy than admitted by Mr. Davies), it will be standard procedure for a number possible purposes – everything from even more effectively than now screening people in need out from health insurance or compensation payment, to restructuring existing insurance schemes to more effectively weed out the potentially unprofitable customers by having no product that suits them. The "assurances" about transparency ring hollower than ever before as Julia Hippisley-Cox speaks of the right of people to be able to know who sits on their data and a "clear audit trail". Won't matter much when coverage of your recent surgery bill is being refused, will it?
Not very surprisingly, there's been criticism and debate, but the UK government seems to entertain no plan of setting a few sensible safeguards for those ordinary people who are supposed to profit from the scheme in place. Such as forcing private industry to commission any research using the database from public research institutions – thereby making redundant the reckless move of transferring data into the commercial secrecy protected hands of these far from public interest oriented parties, where as critics point put, no one will know where they will then go or how they will be used.
Read more here.
Monday, 20 June 2011
More on the Ethics of Uterus Transplantation
Here are two posts that continues to ad takes on the recent news of advanced plans to conduct uterus transplantation at the Sahlgrenska University Hospital in my town.
one at the Oxford Practical Ethics blog by Charles Foster that generated a bit of a discussion (with myself as one of several participants), and
another, very fresh, at the Journal of Medical Ethics blog by Iain Brassington.
In short, Foster takes the discussion to a meta-level, while Brassington wriggles it back to the floor of the clinic.
Enjoy!
one at the Oxford Practical Ethics blog by Charles Foster that generated a bit of a discussion (with myself as one of several participants), and
another, very fresh, at the Journal of Medical Ethics blog by Iain Brassington.
In short, Foster takes the discussion to a meta-level, while Brassington wriggles it back to the floor of the clinic.
Enjoy!
Sunday, 3 October 2010
Uterus transplantation: ethics and pragmatics
Today, Swedish media report (here, here, here, here, here, just to name a few) on plans of a group of researchers at the Sahlgrenska University Hospital and the University of Gothenburg, to conduct the world's first ever transplantation of a human uterus. After successful experiments on rats (and a number of other animals), the team – headed by professor Mats Brännström at the unit of obsterics and gynecology – is now working on baboons in order to secure a basis of results that could motivate a move into the actual human clinical trials. The research is held out as a prospect for certain infertile couples and an alternative to surrogacy, adoption and similar methods currently used to overcome the problems faced by this group of people.
Needless to say, the research raises a number of ethical questions, something at least partly recognized by the researchers when they write in their online presentation of the research: "We think that it is necessary to look closely into these aspects of uterine transplantation before it can be developed and used in the human". This alludes primarily to the need to secure the efficacy and safety of the method before attempting to use it clinically, which is, of course, a priority. However, already this obvious issue will undoubtedly raise more subtle issues.
One of these connect to the rather sad track record of reproductive medicine when it comes to moderating its drive towards applying new ideas and technologies in light of safety and others ethics considerations. Sterilization policies and the early history of IVF continues to be a moral backpack that needs to be carried by contemporary researchers and clinicians in reproductive medicine (just as in genetics). The critical outlook from a feminist perspective by such commentators as Christine Overall and Gene Corea, to name two of the more prominent, have pointed out the dangers of reproductive technology to transform women into mere means for the production of offspring in a social context dominated by mechanisms and cultural patterns aiming at a patriarchal control of reproduction. While the influence of this tendency is hard to argue with (the fate of women have indeed been a secondary consideration in many cases of reproductive technological advances), at the same time, there are also sides to the developments that arguably are to the benefit of women as well as other groups that are or have been systematically marginalised. In as much as individuals, couples and whatever other groupings that wish to transform themselves into a reproducing family are able to overcome oppressive socio-cultural structures, the technological advances do produce new options. The threat of these options being unduly pressed on people (especially women) or used for oppressive purposes in other ways has to be recognized, of course, but you would need to be a very hard-nosed structuralist indeed to claim that the individual can never utilize available options to their own advantage. In fact, one of the main points of the high priestess of queer theory, Judith Butler, seems to be that such utilization is one of the primary roads towards overthrowing oppressive sexual structures – social, cultural and conceptual.
Having said that, the idea behind the uterus transplantation project seems, however, to present a bit of a problem from the just outlined perspective. One of the prime rationales behind the research held out in today's press reports is that the options currently faced by women facing the sort of problems that may actualize a uterus transplantation – adoption or surrogacy – are hard, burdensome or impossible to access. In Sweden, surrogacy is not legally available (except, of course off shore) and adoption is a difficult, lengthy and costly process. In other nations, surrogacy may be available, making it possible for Swedish women with the personal and financial resources required to go there for such arrangements, but not for less fortunate women. In light of this, the researchers claim, uterus transplantation carries a liberating prospect by making available a procedure that may facilitate having children for those of these women who so wish. But what this means seems to be that the situation is exactly of the sort that the feminist critics of reproductive technology have pointed out as problematic. Women who suffer the sort of physical dysfunction we are talking about will not be in a position to freely choose uterus transplantation as the preferred solution to their problem compared to other feasible options. Rather, their freedom of choice will be heavily constrained by socio-cultural-economic factors. Put in another way: the source of the problem to be solved by uterus transplantation seems to be primarily about the oppressive effects of current legislation, economic arrangements and cultural preconceptions. It could, apparently, be solved just as well by making surrogacy and adoption more available.
But of course, such changes may not in fact be forthcoming. The rationale of the researchers may then be turned into one of simple pragmatics. They can say: "we would simply love it if the socio-economic patterns oppressing our patients were to change for the better, but until then we have reason to work on our research". The critic following the sort of lines sketched above would then have to resort to the structuralist mantra of negative feedback loops; the dogma that whatever is done to help people in oppressive circumstances will sustain the oppression. Besides being a corner impossible to get out of, such an argument would need the support of convincing empirical evidence in the area of reproduction, e.g., regarding contraceptives, legal abortion, freedom to marry and divorce, etcetera.
Thus, ethics in this area teaches us to be mindful about the effects of social structures and cultural contexts, so that we are not trapped by blind spots and prejudgments. But the presence of such structures and contexts does not by itself constitute a knock-down argument. History can teach us a great deal about that, as can ethics research and experience from other cases of reproductive technology. The worry I am nurturing rather concerns if the researchers involved have secured access to the resources and competence needed for living up to that, which takes me back to where I began; the evaluation of risks and benefits when (a) deciding whether or not to take the step over to clinical trial, (b) conducting such a trial, (c) deciding on basis of the trial whether or not to offer to the procedure, on what conditions and to whom. And, of course, in light of what has been said, the overarching evaluation in terms of fairness and cost-benefit, whether this is where the resources for liberating and helping the group of patients concerned are best spent. Once a procedure is (ethically and medically) ready for clinical use (i.e. if not the results of the trials are too poor), this last issue will undoubtedly step forward as a primary one in critical discussion.
Needless to say, the research raises a number of ethical questions, something at least partly recognized by the researchers when they write in their online presentation of the research: "We think that it is necessary to look closely into these aspects of uterine transplantation before it can be developed and used in the human". This alludes primarily to the need to secure the efficacy and safety of the method before attempting to use it clinically, which is, of course, a priority. However, already this obvious issue will undoubtedly raise more subtle issues.
One of these connect to the rather sad track record of reproductive medicine when it comes to moderating its drive towards applying new ideas and technologies in light of safety and others ethics considerations. Sterilization policies and the early history of IVF continues to be a moral backpack that needs to be carried by contemporary researchers and clinicians in reproductive medicine (just as in genetics). The critical outlook from a feminist perspective by such commentators as Christine Overall and Gene Corea, to name two of the more prominent, have pointed out the dangers of reproductive technology to transform women into mere means for the production of offspring in a social context dominated by mechanisms and cultural patterns aiming at a patriarchal control of reproduction. While the influence of this tendency is hard to argue with (the fate of women have indeed been a secondary consideration in many cases of reproductive technological advances), at the same time, there are also sides to the developments that arguably are to the benefit of women as well as other groups that are or have been systematically marginalised. In as much as individuals, couples and whatever other groupings that wish to transform themselves into a reproducing family are able to overcome oppressive socio-cultural structures, the technological advances do produce new options. The threat of these options being unduly pressed on people (especially women) or used for oppressive purposes in other ways has to be recognized, of course, but you would need to be a very hard-nosed structuralist indeed to claim that the individual can never utilize available options to their own advantage. In fact, one of the main points of the high priestess of queer theory, Judith Butler, seems to be that such utilization is one of the primary roads towards overthrowing oppressive sexual structures – social, cultural and conceptual.
Having said that, the idea behind the uterus transplantation project seems, however, to present a bit of a problem from the just outlined perspective. One of the prime rationales behind the research held out in today's press reports is that the options currently faced by women facing the sort of problems that may actualize a uterus transplantation – adoption or surrogacy – are hard, burdensome or impossible to access. In Sweden, surrogacy is not legally available (except, of course off shore) and adoption is a difficult, lengthy and costly process. In other nations, surrogacy may be available, making it possible for Swedish women with the personal and financial resources required to go there for such arrangements, but not for less fortunate women. In light of this, the researchers claim, uterus transplantation carries a liberating prospect by making available a procedure that may facilitate having children for those of these women who so wish. But what this means seems to be that the situation is exactly of the sort that the feminist critics of reproductive technology have pointed out as problematic. Women who suffer the sort of physical dysfunction we are talking about will not be in a position to freely choose uterus transplantation as the preferred solution to their problem compared to other feasible options. Rather, their freedom of choice will be heavily constrained by socio-cultural-economic factors. Put in another way: the source of the problem to be solved by uterus transplantation seems to be primarily about the oppressive effects of current legislation, economic arrangements and cultural preconceptions. It could, apparently, be solved just as well by making surrogacy and adoption more available.
But of course, such changes may not in fact be forthcoming. The rationale of the researchers may then be turned into one of simple pragmatics. They can say: "we would simply love it if the socio-economic patterns oppressing our patients were to change for the better, but until then we have reason to work on our research". The critic following the sort of lines sketched above would then have to resort to the structuralist mantra of negative feedback loops; the dogma that whatever is done to help people in oppressive circumstances will sustain the oppression. Besides being a corner impossible to get out of, such an argument would need the support of convincing empirical evidence in the area of reproduction, e.g., regarding contraceptives, legal abortion, freedom to marry and divorce, etcetera.
Thus, ethics in this area teaches us to be mindful about the effects of social structures and cultural contexts, so that we are not trapped by blind spots and prejudgments. But the presence of such structures and contexts does not by itself constitute a knock-down argument. History can teach us a great deal about that, as can ethics research and experience from other cases of reproductive technology. The worry I am nurturing rather concerns if the researchers involved have secured access to the resources and competence needed for living up to that, which takes me back to where I began; the evaluation of risks and benefits when (a) deciding whether or not to take the step over to clinical trial, (b) conducting such a trial, (c) deciding on basis of the trial whether or not to offer to the procedure, on what conditions and to whom. And, of course, in light of what has been said, the overarching evaluation in terms of fairness and cost-benefit, whether this is where the resources for liberating and helping the group of patients concerned are best spent. Once a procedure is (ethically and medically) ready for clinical use (i.e. if not the results of the trials are too poor), this last issue will undoubtedly step forward as a primary one in critical discussion.
Monday, 7 June 2010
Time for Another Nuremberg Trial?
Today, Washington based, Nobel Peace Prize winning, non-profit, non-sectarian organisation Physicians for Human Rights released the latest in a series of white papers and reports documenting and evidencing the advanced, elaborate, large-scale use of torture by the US intelligence and military during the 21st century. The latest report, Experiments in Torture, describes "evidence indicating that CIA medical personnel allegedly engaged in the crime of illegal experimentation after 9/11, in addition to the previously disclosed crime of torture. In their attempt to justify the war crime of torture, the CIA appears to have committed another alleged war crime—illegal experimentation on prisoners". As PHR states in its press release, the allegations are not to be taken lightly even discounting their massive moral weight. The activities described clearly violate the Nuremberg Code – the most basic of formal legal documents underlying research ethical standards applied and accepted throughout the world since at least 40 years.
The Nuremberg Code equals the principles applied by the judges of the part of the Nuremberg Trials where the infamous "Nazi-Doctors", were convicted for crimes against humanity. The incomparable weight and standing of the code as a basis for world-wide research ethical regulation means that even if it has not been literally incorporated into national legislation, its principles are to be found in many parts of the legal system of most countries – also the USA. Thus, even if the US is not a member of the International Criminal Court (thus shielding its citizens against prosecution for crimes against humanity), as PHR notes in its press release, the report opens the door for legal action within the US against medical staff participating in the described activities. Especially so, since an act enabling US federal prosecutors to move on human rights crimes committed by US citizens within the US legal system is well under way, according to the organisation Human Rights First.
Post script: when having finished this piece, I found this article in The New York Times reporting and commenting on the PHR report. The news has also been reported in Swedish media, here and here.
The Nuremberg Code equals the principles applied by the judges of the part of the Nuremberg Trials where the infamous "Nazi-Doctors", were convicted for crimes against humanity. The incomparable weight and standing of the code as a basis for world-wide research ethical regulation means that even if it has not been literally incorporated into national legislation, its principles are to be found in many parts of the legal system of most countries – also the USA. Thus, even if the US is not a member of the International Criminal Court (thus shielding its citizens against prosecution for crimes against humanity), as PHR notes in its press release, the report opens the door for legal action within the US against medical staff participating in the described activities. Especially so, since an act enabling US federal prosecutors to move on human rights crimes committed by US citizens within the US legal system is well under way, according to the organisation Human Rights First.
Post script: when having finished this piece, I found this article in The New York Times reporting and commenting on the PHR report. The news has also been reported in Swedish media, here and here.
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