Monday, November 10, 2014
As NPR reported this morning, researchers in England may soon use genetic therapy to treat diseases that result from defects in mitochondrial DNA.
Mitochondria create energy for cells, and they have their own genes, distinct from the genes that help determine our looks, behavior, and other traits. Because mitochondrial activity is critical to normal cell functioning, abnormalities in mitochondrial DNA can be devastating. Some babies die in a matter of hours.
But because the therapy involves genetic manipulation, it is controversial. While critics are right to insist that we proceed carefully with genetic therapy, many of their arguments are misguided.
Friday, October 17, 2014
The announcement by Apple and Facebook that they will cover the costs of egg freezing predictably provoked some controversy—predictably because it involves reproduction and also because too many people do not trust women to make reproductive decisions.
Interestingly, the challenge to women’s autonomy can come from both sides of the political spectrum, as has happened with several assisted reproductive technologies. Scholars on the left criticized surrogate motherhood on the ground that surrogates were exploited by the couple intending to raise the child, and other new reproductive technologies are criticized on the grounds that women will feel obligated to use them rather than free to use them. Indeed, this concern about coercion drives some of the objections to egg freezing.
Some women freeze their eggs because they face infertility from cancer chemotherapy; other women may not have found a life partner and want to suspend their biological clock until that time comes.
But some observers worry that with the option of egg freezing, some women will succumb to the pressures of the workplace and choose egg freezing not because they really want to but because they feel that have to. After all, if a woman can delay procreation and put in long hours at the office, why shouldn’t she do so? Employers might think that women who forgo egg freezing are not really committed to their jobs.
These concerns are legitimate, but are people too willing to invoke them? Egg freezing is not a simple procedure, nor is its success a certainty. Even if covered by insurance, women are not likely to choose egg freezing lightly. We should worry that egg freezing critics may be too ready to question the decision making capacity of women contemplating their reproductive choices.
Thursday, October 9, 2014
While controversial among some ethics experts, uterus transplantation has been performed several times, most commonly in Sweden. A few weeks ago, a mother for the first time gave birth to a baby gestated in a transplanted uterus.
Should we worry about uterus transplants? Transplanting life-extending organs, like hearts, livers, lungs and kidneys, has become well-accepted, but observers have raised additional questions about transplantation for life-enhancing body parts like faces and hands. As long as transplant recipients have their new organs, they must take drugs to prevent their immune systems from rejecting the transplanted organs. The risks can be substantial. For example, the immunosuppressive drugs put people at an increased risk of cancer. It is one thing to assume health risks for the possibility of a longer life, but are the risks of being a transplant recipient justified by improvements in the quality of life?
Wednesday, October 8, 2014
As NPR reported yesterday, voters in Colorado and Oregon will decide next month whether foods with genetically-modified (GM) ingredients should be identified as such with labeling. And why not? More information usually is better, and many people care very much whether they are purchasing GM foods. Moreover, it is common for the government to protect consumers by requiring disclosures of information. Thus, sellers of securities must tell us relevant information about their companies, and sellers of food must tell us relevant information about the nutritional content of their products.
Nevertheless, there often are good reasons to reject state-mandated disclosures of information to consumers. Sometimes, the government requires the provision of inaccurate information, as when states require doctors to tell pregnant women that abortions result in a higher risk of breast cancer or suicide. At other times, the government mandates ideological speech, compelling individuals to promote the state’s viewpoint. Accordingly, the First Amendment should prevent government from requiring the disclosure of false or misleading information or of ideological messages. (For discussion of abortion and compelled speech, see this forthcoming article.)
What about GM labeling? Is this similar to requiring country-of-origin labeling for meat and produce, a policy upheld by the D.C. Circuit earlier this year? GM labeling likely will mislead more than inform. Many people harbor concerns about genetic modification that are not justified by reality. In particular, as the NPR report indicated, researchers have not found any risks to health from eating GM foods. Indeed, genetic modification can promote better health, as when crops are fortified with essential vitamins or other nutrients. For very good reasons, GM foods run throughout the food supply, whether from traditional forms of breeding or modern laboratory techniques. Thus, the American Association for the Advancement of Science has concluded that GM labeling “can only serve to mislead and falsely alarm consumers.”
[cross-posted at PrawfsBlawg and orentlicher.tumblr.com]
Monday, August 26, 2013
Challenges designed to spur innovative uses of data are springing up frequently. These are contests, sponsored by a mix of government agencies, industry, foundations, a variety of not-for-profit groups, or even individuals. They offer prize money or other incentives for people or teams to come up with solutions to a wide range of problems. In addition to grand prizes, they often offer many smaller prizes or networking opportunities. The latest such challenge to come to my attention was announced August 19 by the Knight Foundation: $2 million for answers to the question "how can we harnass data and information for the health of communities?" Companion prizes, of up to $200,000, are also being offered by the Robert Wood Johnson Foundation and the California Healthcare Foundation.
Such challenges are also a favorite of the Obama administration. From promoting Obamacare among younger Americans (over 100 prizes of up to $30,000)--now entered by Karl Rove's Crossroads group--to arms control and identification of sewer overflows, the federal government has gone in for challenges big time. Check out challenge.gov to see the impressive list. Use of information and technological innovation feature prominently in the challenges, but there is also a challenge for "innovative communications strategies to target individuals who experience high levels of involuntary breaks ("churn") in health insurance coverage" (from SAMHSA), a challenge to design posters to educate kids about concussions (from CDC), a challenge to develop a robot that can retrieve samples (from NASA), and a challenge to use technology for atrocity prevention (from USAID and Humanity United). All in all, some 285 challenges sponsored by the federal government are currently active, although for some the submission period has closed.
These challenges are entertaining, call on crowdsourcing for knowledge production, find new sources of expertise way beyond the Beltway or even US borders, encourage private sector groups rather than government to bear costs and risks of development (or failure), and may bring novel and highly useful ideas to light. So what's not to like? I may be just grumpy today, but I have some serious worries about the rush to challenges as a way to solve persistent or apparently intractable problems.
Challenges may be more hype than achievement, more heat than ultimate light. They may emphasize the quick and clever--the nifty over the difficult or profound. They may substitute the excitement of awarding and winning a prize for making real progress on a problem. Most troubling to me, however, is the challenge strategy's potential to skew what government finds interesting and what it is willing to do. Many challenges have private partners in industry, appear likely to result in for-profit products, or set aside values that may be more difficult to quantify or instantiate.
Take the HHS Datapalooza, for example. Now entering its fifth year, the Datapalooza is an annual celebration of innovations designed to make use of health data available from a wide variety of sources, including government health data. "Data liberation" is the watchword, with periodic but limited references to data protection, security and privacy. A look at the 2013 agenda reveals a planning committee representing start-ups and venture capital. It also reveals a $500,000 prize awarded by Heritage Provider Network, a managed care organization originally located in Southern California but now expanding in markets in Arizona and New York and serving many Medicare Advantage patients. The prize was for a model to predict hospitalizations accurately and in advance--so that they could be avoided. The winning team, powerdot, didn't reach the benchmark needed to win the full $3m prize. So . . . Heritage is continuing the competition, making more (and apparently no longer deidentified) data available to a select set of leading competitors in the original competition in order to improve the accuracy of the modeling. (A description of deidentification methods for the data made available to all entrants in the original competition is available here.) There are of course real advantages in developing a good predictive model--for patients in avoiding hospitalizations, and for Heritage in saving money in patient care. This is potentially a "win win"--as Mark Wagar, the executive awarding the prize stated, "it's not just about the money; it's personal." But "it's not just about the money" is telling: the risk of these challenges is that they are about the money, and that the money will come to dominate personal or other values unless we are careful.
Solutions, if my concerns are well-founded? Trying to turn back the disruptive clock and fight the appeal of challenges is probably futile--although perhaps some of the initial enthusiasm may wane. One solution is to join in--after all, challenges are infectious and potentially innovative--encouraging more challenges aimed at different problems--say, challenges for privacy or security protection alongside challenges for data liberation and use. Or, challenges for improving patient understanding of their health conditions and informed consent to strategies for managing them--as some of the challenges aimed at patients with diabetes illustrate. Another solution is to watch very carefully what challenges are offered, who funds them, who wins them, and what is ultimately achieved by them.
August 26, 2013 in Bioethics, Biotech, Competition, Health Care Costs, Health Care Reform, Health IT, Health Reform, Obama Administration, privacy, Reform, Technology | Permalink | Comments (0) | TrackBack (0)