“Biotestament? Facebook can help you”

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By Cristiane Avancini Alves

The question reproduced in the title was posed – last year – by the Italian newspaper “Corriere della Sera“, which described how an Italian association created an application in the social network that allows users to appoint two “testamentary executors” who can activate, in the event of the user’s death, the publication of a message previously chosen by him to be published in his profile. The service also enables users to send private messages to Facebook friends, as well as a final farewell to relatives, and a ‘biological testament’ can be viewed by all members of the network. The creators of the service understood that social networking can be a means of publicizing and thereby respecting a person’s choice regarding the medical treatment she wants to receive at the end of life. However, some problems can emerge – for example, incorrect completion of the virtual forms, which could lead to false communication and comments regarding the death of a user.

The publication in a social network of our “last wishes” passes through end of life decisions that were previously made in a personal and familiar atmosphere to different members, followers, and users of a social network. The point, here, is not if this is “good” or “bad”, but it does raise questions as to the new ways of publicizing elements that were circumscribed to our private life and how, when and why we are doing so.

In the U.S., well-known cases including Quinlan, Cruzan and Schiavo received strong media coverage, and in some cases led to legal change. The Patient Self-Determination Act (PSDA) was passed in the wake of Cruzan, followed by the Supreme Court’s recognition of constitutional protection of the right of patients to refuse treatment that sustains life, including food and water. U.S. and Italy both have numerous examples of legal battles bringing private cases into public light via the media. In Brazil, a recent Resolution of the Federal Board of Medicine addresses advance directives before any specific case being argued. However, there is no law about the subject in the country, and the discussions raised after publication of the cited Resolution were not well interpreted or spread by the Brazilian media. This is a subject that I want to develop in my next post. For now, it is clear that the conjugation of media and social information and responsible structuring of legal documents are fundamental tools to balance legal and bioethical results.

Twitter Round-Up (12/2-12/8)

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By Casey Thomson
This week’s Twitter Round-Up features an “American Idol-style” selection of research grant winners, the problems facing children in Syria attempting to be vaccinated, and a review of where we stand with current patient health information privacy and security.
  • Michelle Meyer (@MichelleNMeyer) retweeted an article about a newly emerging landmark case in the United Kingdom. In the suit, a childless couple denied IVF funding due to the woman’s age is suing Health Secretary Jeremy Hunt (because he is “ultimately accountable for healthcare in England”) on the basis of age discrimination. Thought to be the first venture to sue the Health Secretary concerning decisions about this NHS fund rationing, this case also will be the first instance where age discrimination laws have been employed to try for fertility treatment. (12/3)
  • Alex Smith (@AlexSmithMD) shared an article about a problem patients must deal with when approaching post-hospitalization care: Medicare’s offer to pay for hospice care or for a Skilled Nursing Facility (S.N.F.), but only rarely at the same time. Not only does the choice create a financial predicament, but it also has extensive repercussions for the patient’s health. Calls for a combined benefit process between hospice/palliative care and S.N.F. have been made, including a proposed “concurrent care” demonstration project in the Affordable Care Act. (12/6)
  • Dan Vorhaus (@genomicslawyer) linked to a summary of the Ponemon Institute’s Third Annual Benchmark Study on Patient Privacy & Data Security, reporting on the challenges still being faced to safeguard protected health information (“PHI”). (12/6)
  • Michelle Meyer (@MichelleNMeyer) additionally retweeted a link explaining Brigham and Women’s Hospital’s attempt to deal with the rising difficulty of choosing which research grants to support: an “American Idol-style” public online voting. With almost 6,500 votes cast, the public engagement experiment picked a project hoping to research methods for integrating genomic sequencing into newborns’ routine medical care. When future grant holders are struggling to award between a set of equally deserving project proposals, this push for public involvement (after having confirmed scientific rigor) may have intriguing implications. (12/6)
  • Daniel Goldberg (@prof_goldberg) also linked to a study in Denmark testing the relationship between socio-economic status (SES) and blood pressure levels. Despite having a healthcare system that is free and equal-access regardless of factors like SES, the study found that SES had a “significant effect on BP [blood pressure] control” in this survey. (12/7)
  • Arthur Caplan (@ArthurCaplan) posted a report by UNICEF on the efforts by parents in the Syrian Arab Republic to get their children vaccinated. With many medical centers destroyed by the conflict, and with health practitioners having to operate and transport supplies in the dangerous environment, children have been unable to receive routine vaccinations for several months. This campaign aims to provide such vaccinations (specifically for measles and polio) to children, having advertised via churches, mosques, schools, television, and even by SMS to get greater coverage. (12/7)
  • Frank Pasquale (@FrankPasquale) included a book review of Pharmageddon by David Healy, a look at how pharmaceutical companies are excessively influencing the medical industry particularly with “diagnostic categories and clinical guidelines.” The result, according to Healy: a society where people “think about their bodies as a bundle of risks to be managed by drugs,” with a workforce that is “getting ‘sicker,'” and with “major pharmaceutical companies…banking on further overdiagnosis and overtreatment,” all “undermining universal health care.” (12/8)

Note: As mentioned in previous posts, retweeting should not be considered as an endorsement of or agreement with the content of the original tweet.

Petrie-Flom Interns’ Weekly Round-Up: 12/1-12/7

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By Hyeongsu Park and Kathy Wang

Extreme COI: The Named Beer University Studying the Health Effects of Beer?

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The Petrie-Flom Center recently co-hosted a conference with the Safra Center on Institutional Financial Conflicts of Interest in Research Universities (fCOI), exploring situations where universities get cozy with industry.  My friend, Jonathan Marks, is doing some really interesting work (see e.g., this) on conflicts of interest in the field of food-health research in particular.  And, Michael Sandel also has a new book out called, What Money Can’t Buy, wherein he covers everything from organ sales to stadium naming rights, lamenting the commodification and loss of truly public spaces. (For example, a certain university near me has given their stadium name to Wells Fargo, along with dozens of other universities that have done likewise.)

In that light, this HuffPo story caught my eye:  “Beer May Have Anti-Virus Properties, According To Study Funded By Sapporo Breweries.”  Not only is the study on Sapporo beer funded by Sapporo Breweries, but it was conducted at “Sapporo Medical University.”  That looks like extreme COI, almost as bad as this, one of my favorite New Yorker cartoons, where the physician is actually wearing ads like a race-car driver.

Seriously, “Sapporo Medical University?”  Is this an instance of a company department simply calling itself a university, like McDonald’s Hamburger U?  Or, did the brewery actually buy the naming rights to the entire university?  Alas, the answer is no:  “Sapporo” is the name of a large city in Japan, where the public “Sapporo Medical University” is located.

Public Health Extremism

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By Max Mehlman

In my new book from the Johns Hopkins University Press, Transhumanist Dreams and Dystopian Nightmares: The Promise and Peril of Genetic Engineering, I observe that the government might try to use its power to protect the public health to regulate human genetic engineering, but that given mistakes such as the eugenics sterilization programs of the early 20th century, we must be on guard against the overzealous use of this power.

 An example of the excessive use of public health powers, although not aimed specifically at the hazards of genetic engineering, can be found in an article in the November 8, 2012, issue of the New England Journal of Medicine by Harvard professors Michelle Mello and Glenn Cohen, in which they state that the Supreme Court’s upholding of the individual insurance mandate as a tax “has highlighted an opportunity for passing creative new public health laws.” They give an example of the laws that they have in mind: higher taxes on people whose body-mass index falls outside of the normal range, who do not produce an annual health improvement plan with their physician, who do not purchase gym memberships, who are diabetic but fail to control their glycated hemoglobin levels, and who do not declare that they were tobacco-free during the past year.

Some of these suggestions seem ineffectual. It’s hard to imagine what the public health benefit would be from rewarding people for making a health-improvement plan without having to follow it or for joining a gym without having to use it. As for making people swear against the use of the “pernicious weed,” aside from being unenforceable, it is too reminiscent of the loyalty oaths of the McCarthy era to be taken seriously.

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Reminder: Abstracts for Petrie-Flom Annual Conference Due 12/14/12

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Another reminder: abstracts for the Petrie-Flom Center’s annual conference – this year entitled “The Food and Drug Administration in the 21st Century” – are due one week from today, no later than December 14, 2012.  This one and a half day event will take place Friday and Saturday, May 3-4, 2013, at Harvard Law School in Cambridge, Massachusetts.

For further details, see the Call for Papers/Presentations.

Need Revenue? Taxes that Promote Health

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The Congressional Budget Office just released a comprehensive new report investigating the budgetary effects of a hypothetical increase in the federal excise tax on cigarettes and small cigars from, $1.01 to $1.51 in fiscal year 2013. The report’s level of sophistication is unprecedented in its ability to evaluate the effects this change could have. Given the federal budget’s current state of affairs, perhaps the most significant finding from the analysis is that increasing the excise tax on cigarettes could reduce federal budget deficits by a total of about $42 billion through 2021. The value of the health costs and lives saved goes without saying.

Of course, the same could be said for some other products that can be harmful to health.  Alcohol taxes also suppress consumption and reduce the harms associated with drinking, and thanks to inflation and the absence of indexing in state tax laws, they are generally now at real rates we had in the ’50s and ’60s. See Alex Wagenaar’s systematic review for more on the subject.

So, if a majority of Americans are seeing a need for revenue, why not raise it, in part, where the result will also include saved lives and saved health care costs?