SJTP Fellow and Environmental Studies doctoral student Tiffany Wise-West filed this report from a lobbying trip to Washington, DC with the “UC in DC” program. The statements made in this piece are her own opinions and not those of any UC-affiliated advocacy group.

In late May, 2013 a delegation from UCSC joined other UC campus delegations for UC in DC day, advocating to Congress for strong and sustained federal funding of graduate research and education. Over 26,000 graduate researchers are partially supported by the $3.1 billion in federal research funding annually, representing two-thirds of total research funding awarded to UCs each year. With over 7% of the nation’s PhDs being awarded from the UC system, UC leads the way in building the intellectual capital necessary to fill the 2.6 million jobs in California projected to require advanced degree by year 2020.

Graduate training, long a focal area of the Science and Justice Research Center, will be impacted by cuts to federal discretionary funding in the next fiscal year as a result of the sequestration mechanism put into law by the Budget Control Act of 2011. Additional discretionary cuts to research, education, and health programs will be accomplished in future years by decreasing the total funds available for annual appropriations. Without a change to or repeal of the sequestration law, the following impacts to graduate education will go into effect:

 · Deep cuts through year 2021 to key agencies funding graduate research opportunities such as the National Institutes of Health, National Science Foundation, USDA, NASA, Department of Defense, and others.

· Reductions in student aid support will occur as the number of Pell Grants awarded decrease through year 2021 and interest rates for new federal students loans could increase from 3.4 to 6.8% after July 2013.

Obviously failure to “build the brain trust” has the potential to stifle technological innovation and could be economically damaging for the State. Chancellor Blumenthal, in his Open Forum piece in the May 9, 2013 edition of the San Francisco Chronicle, frames this issue in terms of UCSC’s cancer genome research and asks how we, as a society, cannot afford this research that is so clearly in the public’s interest. Thus, crucial social justice questions are also associated with the current funding situation. Societal human health impacts aside, the inability to maintain or increase funding to graduate programs and grant-making agencies will have dire impacts on prospective graduate students from disadvantaged backgrounds or communities with respect to affordability and accessibility of healthcare.

Moreover, as Senator Harkin’s (D-Iowa) Education Policy Advisor pointed out, the Senator believes that education should never be treated as a discretionary expense but rather always speaks of it in terms of an investment in a self-perpetuating source of innovation, an economic driver and equalizer. As long as Congress thinks of educational funding as an “expense” vs. an “investment” and continues to make choices that prohibit pathways to advanced degrees, generations of Americans may accept the notion that advanced degrees are simply “out of reach” and be dissuaded from pursuing them.

So, what are our options? Outside of aggressive advocacy with Congress to improve the situation through legislative means, UC delegates informed Senator Feinstein (D-CA) that UC is working to enhance early and robust alumni contribution campaigns and foster public-private partnerships in research funding as a means to deal with continual uncertainty and reductions in funding. While these actions can make significant contributions, they do not begin to reach the order of magnitude required to offset the divestment of federal funding in graduate research and education. Congressional representatives from districts in which UCSC is located all explicitly support UC’s graduate research funding agenda. But with such a divided Congress, it is unlikely that legislative action will succeed in maintaining or increasing funding levels.

The next opportunity to weigh in on this issue is at the state level by contacting your legislator to support the increases proposed for UC in Governor Brown’s proposed, revised state budget that was released on May 14, 2013 and will be voted on by the legislature on June 14, 2013.

 

 

SJRC Co-Director Jenny Reardon published an Op-Ed in the San Francisco Chronicle on March 2, 2013, “Should patients understand that they are research subjects?” In the article she recounts visiting a physician at UC San Francisco and not being able to parse the standard informed consent to having tissues and/or medical data used anonymously in medical research. At the heart of problem is a confusing mix of U.S. case law that denies ownership over one’s bodily tissues once they have left one’s body, medical privacy standards that require providers and researchers to inform you that they may use the tissues for research without directly requesting permission, and the speed at which medical advances are occurring. Given these conditions, it is actually imposible to know what one is consenting to when one signs these ubiquitous forms, making that ‘consent’ tenuous at best. Reardon, whose research examines the social, ethical political dynamics of biomedicine and genomics, notes that even experts like her are in the dark about how their tissues might be used in the near future, and recent research has shown that while researchers may aspire to keeping tissues and data anonymous it is no longer technically feasible.

I have spent two decades studying this minefield, and even I had a hard time making sense of what it might mean for these researchers to have access to my samples. For example, UCSF would be required by law to make my samples “anonymous,” yet research published in Science the day of my visit revealed that even anonymous samples can be reidentified. Does this mean that information gained from my samples might be linked back to me?

Reardon cites recent developments in patient consent at the University of Washington medical centers as a model for UCSF and other providers to adopt. At the University of Washington, patients are able to opt out of research without their physicians knowing, and thus not feel as if they are risking their access to care. Additionally, Reardon supports giving patients more rights to affirmatively opt in to research whenever their tissues or data is desired by researchers.

The San Francisco Chronicle editorial board also published an editorial in support of Reardon’s proposal. The editors suggest that as the US Department of Health and Human Services revises its standards for medical consent, they should keep these principles in mind:

— Patients may not have legal “property,” but they still have rights. Regulators should err on the side of more patient disclosure, not less.

— Compensation is going to be a big question going forward, but it doesn’t have to be monetary. If there’s no longer a way to provide patients with anonymity, will they have free or reasonably priced access to medical developments that come about as a result of their cells or DNA?

— Standardized disclosures should be encouraged throughout the industry. Different institutions have widely varying policies. Patients don’t deserve to be confused.

In response to these two pieces, UCSF’s Elizabeth A. Boyd, associate vice chancellor for ethics and compliance, and Daniel Dohan, associate professor of health policy and social medicine, noted that the success of medical research rests on relationships of trust between physicians, researchers and patients. The development of personalized medicine, which promises to revolutionize health care by tailoring treatments to individuals, will require willingness on the part of patients to provide samples for research and testing. Boyd and Dohan note that UCSF supports revising consent standards, and cite the recent creati0n of EngageUC, an initiative on the part of UC physicians and faculty to develop new comprehensive guidelines.

We want to develop a consent process and a set of policies that will help ensure that all patients – whether they have volunteered for specific research, are donating leftover tumor samples, or are being admitted to the hospital for care – truly understand what information may be gleaned from their samples, how that information will be used, whom it will be shared with, and what privacy controls can – and cannot – be guaranteed.

Reardon and the rest of the UCSC Science & Justice Research Center will continue to contribute to these conversations.