Friday, October 24, 2014

Henrietta Lacks Part 2




Medical ethics have reached a series of critical turning points prompted by technology, money and Ebola and the best you can say is that a few of the turns taken appear to be the wrong ones.
             We're now confronted with the actions of two prominent figures in American healthcare—Dr. Clay Johnston, new dean of the new Dell School of Medicine at the University of Texas in Austin and his former boss Dr. Susan Desmond-Hellmann, the just-appointed leader of the Gates Foundation. These two physicians were apparently the point people as the University of California San Francisco started plans rolling last year to get more black kids for medical research by looking to the darker and poorer East Bay.
            UC President Janet Napolitano recently announced in a talk before the Public Policy Institute in Sacramento (available on YouTube) the “acquisition,” as she called it, of Oakland Children’s Hospital by UCSF which will ultimately serve that purpose whether intended to or not. To recap, last year UCSF’s Clinical and Translational Sciences Institute (CTSI) which is the medical commercialization arm of the university and includes research participant recruitment—then led by Dr. Johnston—was approached by Dr. David Durand, head of pediatrics at Oakland Children’s Hospital with a proposal to increase “catchment,” as Dr. Durand called it, of black children for medical studies. (More recently you may recall Dr. Durand from the nightly news as chief spokesman defending Oakland Children’s during the Jahi McMath fiasco—in which a 13-year-old black girl was left brain dead after entering the Oakland kid's hospital for a tonsillectomy.) The scientific reason for the move to acquire more African-Americans for study was actually explained coincidentally, around the same time, by the chief geneticist at UCSF Dr. Neil Risch, who in written response to questions by Ta-Nehisi Coates of The Atlantic Magazine noted the special value of African-ancestry individuals for medical study: a greater variability of genetic information.
This was also about the same time that Dr. Desmond-Hellmann, known as SDH, who was then UCSF chancellor, implored the public to “share your data” with researchers, during a TedMed talk. In an interview on KQED radio before she left for Gates—joined during the chat by Frances Collins of the NIH and Margaret Hamburg on the phone from the Food and Drug Administration—SDH also noted the bad history of minorities in medical research and now she and Dr. Johnson have just provided one more reason. “Recruitment in San Francisco can be especially challenging,” according to the synopsis of the Oakland Children’s proposal on the website of UCSF’s CTSI, then run by the man who has just been chosen the new UT medical school dean in Austin. “In particular there is simply a limited pool of children living in San Francisco for pediatric studies, as well as a limited pool of African Americans of all ages. Fortunately there is a population of more than 2 million individuals in the East Bay which, for the most part, has not been tapped for UCSF-based clinical trials.”
First there was a "research agreement" between UCSF and the hospital and now Oakland Children’s is being described as “acquired” by UCSF under new UCSF chancellor, Australian pediatric researcher Dr. Sam Hawgood. Last year, at the time of the announcement of the research agreement, assurances were made publicly that Oakland Children's was not being taken over. President Napolitano just said it was. That there is a certain level of shame apparent at UCSF is clear from the fact that the university kept the acquisition off its website. The "research agreement" with Oakland Children's was mentioned earlier this year on UCSF's site—but it was up to President Napolitano to call the transaction what it really was. The institution that was Oakland Children's Hospital is now UCSF Benioff Children's Hospital in Oakland to go along with UCSF Benioff Children's Hospital at Mission Bay which opens soon near the new and extended research labs and where the UC Regents meet in Genentech Hall. The enterprising Dr. Durand now does his magic for UC.
              "Several times we mentioned pediatrics, we mentioned the Children's Hospital San Francisco, the Children's Hospital Oakland," Dr. Deborah Grady, interim head of UCSF's CTSI upon Dr. Johnston's departure said after the latest CTSI retreat, "and I think we need to have a focus on promoting pediatric research to the extent we can." At the retreat the acquisition of Oakland Children's was described as a "leverage opportunity" for CTSI's renewal of National Institutes of Health funding next year; there was talk of apps "for recruiting for clinical trials"; use of local pharmacies to facilitate the outpatient drawing of blood for medical studies; and Bay Area-wide databases on children, Dr. Grady said.
             "We're talking big data in the extreme," Keith Yamomoto who is the UCSF vice chancellor for research told an audience at the Chautauqua Institution a few months ago, also available on Youtube, "data of different kinds in the extreme, imaging through microscopes and DNA sequences, behavior of various ethnic groups in large cities—large and small." The only thing UCSF's majority white physicians and scientists who wish to tap minority health data don't report having done is consulting the community affected, especially blacks who appear to be the main study target of the university. Indeed UCSF has done its best to keep its plans under radar. "There are other UCSF strengths, there are big activities going on right now in precision medicine and if you think about it a lot of what the precision medicine folks need to do or want to do," Dr. Grady said after the UCSF business-science retreat, "is the same thing we've been talking about. They need to have a lot of information on a lot of people, they need it in some uniform way, they need access to [patient] genetics and other [gen]omics measurements."              

 The cynicism apparent in all of this is breathtaking in scope and is a throwback to the Tuskegee experiments of a prior century. Keep in mind that at the same talk when she revealed the Oakland Children's acquisition President Napolitano described UC as the fourth largest medical provider in California and the eighth largest in the country. Healthcare makes a lot of money for the university and privately for many UCSF scientists as well.

 Pediatricians in San Francisco complain that they cannot even get some new-age high-tech parents to vaccinate their children. Mostly white and predominantly affluent parents in S.F. will not offer their kids for medical experiments, so the University of California looked east and took over a hospital that serves lower-income minorities. Nor is it a surprise this is happening at UCSF—perhaps the most segregated campus in the most diversity-challenged major public university system in the country. Bakke or no Bakke, affirmative action allowed or disallowed, UCSF physicians and scientists depend on a pool of lower-income minorities for the raw resources to do their jobs and to instruct the university's healthcare trainees. Even Dr. Johnston in an interview at his new gig in Austin slammed his prior employer's lack of diversity: "I'm certainly not going to defend UCSF and its track record; we both know it needs to be better."
            There's a symbiosis here that's not entirely fair, in fact it's kind of parasitic, you don't even have to consider the creepiness of a headline like "UC targeting black kids for medical trials," what UCSF is offering in return for patient data is actually second-class healthcare. Outcomes for minorities cared for by white providers are statistically worse, a fact that has not deterred the university. The #2 guy on campus Executive Vice Chancellor Jeffrey A. Bluestone, the university's commercialization guru on the pecking order between Dr. Johnston and SDH announced his resignation two days after the real reason for the Oakland Children's plan was publicized. Now the two other doctors who presided over the original reception of the Oakland Children’s expansion have been loosed on other vulnerable populations: Dr. Johnston will be coordinating the new teaching hospital and first medical school in Austin while Dr. Desmond-Hellmann runs the Gates Foundation which does good works all over the world. Bill and Melinda Gates may have actually made the right call by hiring SDH, however.
Potentially the most controllable factor in high healthcare costs are drug prices and before going to UCSF—SDH was Big Pharma incarnate. She was at Genentech for a decade before becoming chancellor at UCSF, and the idea at Gates seems to be that she'll be successful fighting for lower drug prices especially in the Third World because she knows the industry so well. So too she may be valuable in the pharmaceutical response to outbreaks like Ebola.
               SDH knows the industry, certainly—she made tens of millions of dollars from drug development over her time at Big Pharma, only her judgment is in doubt. Now she'll theoretically be working without profit in mind but with Dr. Desmond-Hellmann's history (see prior posting “Choosing Dr. Johnston”) it's probably prudent to wait and see. That argument is much less effective in the case of Dr. Johnston (see prior posting “Choosing Dr. Johnston.”) Like SDH he was also selected by the University of Texas for business ties—he was in charge of research participant recruitment at UCSF, an institution that has become world renown for both good medicine and bad influence by industry. SDH may solve a problem for the Gates Foundation, for all of us in fact. But that Dr. Johnston has come to Austin likely only means creating more of the problems Dr. Desmond-Hellmann is supposed to fix.

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