11 for Bioethics in ’12

December 29, 2011


1. The $1000 Genome

According to Dr. Debra Mathews, Assistant Director for Science Programs at the Berman Institute, 2012 may very well be the year that heralds the arrival of the “$1000 Genome” – putting a complete, personal genetic map within reach of the general population. “There has been an exponential increase in the number of human genomes that have been sequenced in the past couple of years,” says Mathews. “In 2010, there were maybe 100 sequenced, in 2011 maybe 10,000. We’re looking at more than 100,000 by next year… most of them by Direct-to-Consumer genomics companies.”

Ishan Dasgupta, a researcher and neuroethics specialist at the Berman Institute, says that this increase in availability will herald a big cultural change: “We’re entering the first year in which having your genome sequenced isn’t weird or unusual – it’s going to become a cultural norm.” Mathews anticipates a big impact on bioethics. “The game will switch from the generation of the genome to the interpretation of the genome. What are we going to do with all this information?” Matthews says. Not all of it can be interpreted, Mathews warns, even by experts. It will be a task for bioethicists to figure out how to deal with the coming avalanche of personalized, potentially misleading genetic information.

 


2. Bioethics Goes Global

Professor Nancy Kass, Deputy Director for Public Health at the Berman Institute, suggests that 2012 will see the continued expansion of bioethics as an academic discipline. “Bioethics is no longer a boutique subject,” Kass says, “it has become very firmly established as part of universities and health systems across the globe, and that’s going to carry on next year.” Joe Ali, a lawyer and Research Scholar on the Berman Institute faculty agrees: ‘Bioethics entered the global mainstream mostly through research ethics, but now it is expanding to address broader concerns.’

 


3. The Globe Does Bioethics

Just as bioethics is predicted to become an ever more established part of the global academic community, so do Berman Institute faculty expect that the global community will look increasingly to bioethics and bioethicists to help address international health issues. Professor Jeremy Sugarman, Deputy Director for Medicine at the Berman Institute, suggests that addressing bioethical questions about recent advances in HIV/AIDS treatment will require international cooperation. He also notes that, in periods of war and conflict, “major bioethical issues, like medical torture, come to the fore.” He argues that bioethics will become an increasingly important lens for thinking about conflict and disaster.

Dr. Renee Boss, Assistant Professor of Neonatology and a core member of the Berman Institute faculty, sees this as a bright spot on the horizon: “The international cooperation that we are starting to see around questions in disaster ethics is very encouraging.”

 


4. The Growth of Public Health Ethics and the Obesity Issue

Bioethics has always tackled important issues in public health, but in 2012 Professor Nancy Kass believes that public health ethics issues will come to the forefront. “Public health ethics are very much in vogue right now, and that’s going to continue into the new year,” Kass says. “If you think about the big bioethics issues constantly in the news – vaccines, obesity, disaster preparedness – they’re all public health issues, and bioethicists will become an increasingly visible part of these discussions.”

Dr. Dan O’Connor, Research Scholar at the BI, agrees, noting that “the obesity issue is, forgive the pun, only going to get bigger in 2012. I’d like to think that at last there may be a realization amongst public health policy makers that obesity is a function of poverty and not a moral failing, but I predict that, instead, there will just be more blame placed directly onto overweight individuals, by governments and cultural commentators alike.”

 


5. Stem Cells Back on the Agenda

In recent years, some of the controversies around stem cell science appear to have died down, but Alan Regenberg, Bioethics Research Manager at the Berman Institute, predicts that 2012 will see stem cells make a comeback as a major topic in public discussions of bioethics. But he warns that, in spite of apparent scientific advances, things are likely to get more muddled and difficult before they get better. “In the coming year, scientists are likely to demonstrate the importance of and challenges associated with all types of stem cells – adult, embryonic, induced pluripotent. These findings are unlikely to be very helpful in shaping debates that pit the moral status of embryos against possible clinical benefits,” he says, adding that “I expect that some of the early trials of stem cell-based interventions will begin to yield promising results, but I would not be surprised by effects that are modest and encumbered by a need to refine our understanding of mechanisms to truly match the promise that has been hyped.”

 


6. Bioethics and the General Election

It seems inevitable that healthcare reform will be a big part of the coming general election, but Professor Ruth Faden, Director of the Berman Institute, predicts that it won’t be the only bioethics issue on the electoral agenda. “Bioethics is going to be right at the front of this election,” she says, “from healthcare costs, to end of life care to stem cell research. I think bioethical issues will be even bigger than they were in 2008 or 2004.” Indeed, Dr. Renee Boss believes President Obama has already started to address bioethics controversies in advance of November 2012. “I think the decision to restrict access to Plan B was partially an election issue for him,” she says.

 


7. The Attack on Reproductive Rights

Boss sees the President’s decision about Plan B as part of a wider attack on women’s reproductive rights that has been gaining steam in the past decade and she predicts will only intensify in 2012. “Access to abortion in the US has decreased significantly in the past ten years,” she says, citing numerous states who have passed legislation restricting abortion in a variety of different ways, including laws which permit abortions only to take place within buildings of a certain size, i.e. hospitals, thereby preventing smaller women’s health clinics from providing abortions. “Everyone in bioethics dropped the ball on this,” says Boss, “abortion rights were kind of marginalized within bioethics.” Unless that changes, she predicts that 2012 could see the US “effectively return to a pre-Roe situation, where wealthy women in some states will have access, but it won’t be a real healthcare right for the majority of women.”

 


8. The Rise of the Healthcare ‘Customer’

Both Dr. Renee Boss and Dr. Dan O’Connor believe 2012 could very well be the “year of the customer” in healthcare. “More and more I see hospitals referring to the people we see as ‘customers,’” says Boss. “Once upon a time they were patients, then they were consumers, now they’re customers – we’ll see more of that next year.” Dr. O’Connor adds, “The rise of the ‘healthcare customer’ and the monetary exchange relationship it implies changes the role of the healthcare professional. In 2012, bioethicists will need to ask what it means for patients to be customers – does it just make physicians salespeople? What becomes of the ethics of care?”

 


9. The ‘Learning Healthcare System’

Drs. Nancy Kass and Ruth Faden both suggest that in 2012 bioethics will increasingly address the issues raised by the Learning Healthcare System (LHS). “I think this is going to be really big next year”, says Kass. The LHS, with its emphasis on evidence-based medicine and the continuous accumulation and analysis of patient (or customer!) health information, presents us with numerous ethical challenges, many of which stem from the way the LHS blurs the traditional boundaries between research and treatment. “There are going to be some big changes in research ethics in 2012,” Kass concludes, ‘and not just the proposed changes in federal regulations. The Learning Healthcare System will be big news, too.”

 


10. Bioethics at the Olympics

Dr. Dan O’Connor, the lone Brit on the Berman Institute faculty, admits to some bias in this prediction, “but the 2012 London Olympics will be a perfect opportunity for some interesting public discussion about two big bioethics issues: performance enhancing medical technologies, and gender expectations. I predict there will be a tremendous amount of argument about the rights and wrongs of Oscar ‘Blade Runner’ Pistorious’s ‘flexi-feet’ prosthetics, which many commentators still consider to be a unfair physical enhancement,” O’Connor says. “2012 may be the year when we fumble towards a coherent explanation of why some enhancements are acceptable, like nutritional supplements and spiked shoes, whilst others – steroids, HGH – are not.”

O’Connor also predicts that the spotlight will fall back on Caster Semenya, the South African woman athlete at the center of 2009’s gender controversy. “Semenya has been cleared to run as a woman by her own country and the IAAF, but because she doesn’t look like the vision of western femininity, people will still question her sex and sexuality. The London Olympics are going to be an interesting opportunity for bioethicists to talk about the body and what we think it is, or should be, capable of.”

 


11. Healthcare Reform: the Endgame?

Finally, of course, 2012 will be the year in which the Patient Protection and Affordable Care Act (aka ‘Obamacare’) goes before the Supreme Court. The big issue, according to Berman Institute faculty, will be the constitutionality of the mandate – the requirement that everyone who can must purchase health insurance. Faculty are divided in their predictions as to how the case may proceed. Dr. Debra Mathews is pessimistic: “I think the mandate will be struck down, and nothing else [in the Act] works without it.”  Professor Nancy Kass agrees, “if the mandates goes it all goes.”

Joe Ali is more optimistic, agreeing that the mandate may be “stretching notions of constitutionality,” but believes that most parts of the Act will remain law. Alan Regenberg suggests that liberals may be underestimating Judge Kennedy – the clear swing vote on the Court – and Dr. Dan O’Connor agrees, suggesting that “it probably all comes down to Anthony Kennedy.”

“Whatever happens, says Dr. Jeremy Sugarman, “bioethicists will have a duty to respond to the new healthcare

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