Because I said so: The vaccination debate and a waning trust in science

trust

Written By Dr. Erika E. Alexander

A few weeks ago, I opened my Facebook page to find a war in progress. Shared posts from CNN, Time Magazine, the New York Times, and a wide variety of blogs about vaccination and the “anti-vaxxer” movement littered my timeline.  Each post by members of my highly educated, scientist-heavy friend list was accompanied by the poster’s vehement condemnation of the anti-vaccination movement in Facebook status form.  Although spirited, this war of words appeared to be one-sided, in that I generally only saw one type of argument: Vaccinate your child because SCIENCE says so.  But is “Science says so” a valid argument in this day and age?

This vaccination debate has been going on for over a decade now, but has most recently been brought back into the public eye due to an outbreak of measles traced back to a particularly sensational place: Disneyland, USA .  That a disease considered eradicated in the United States since 2000 could attempt a comeback in what is affectionately known as “the happiest place on earth” horrifies many, and for good reason. Since January 1 of this year, over 150 cases of measles have been reported in 17 different states, according to the Centers for Disease Control and Prevention (CDC). These numbers are reported from 3 separate outbreaks in California, Illinois and Nevada, with California having the largest reported outbreak of the three.  The CDC also reports that the majority of people (read: children) who fell ill were unvaccinated.

The anti-vaccination movement (also known as the  “anti-vaxxer” movement) has also been in the news of late, because of this most recent outbreak and the idea that unvaccinated children are its cause. Many attribute the beginning of the anti-vaccination movement to a 1998 study done in the UK by Andrew Wakefield, which drew a link between the MMR (measles, mumps, and rubella) vaccine and increased numbers of autism spectrum disorders in vaccinated children (Read more here).  The story was immediately picked up by the media, and inspired panic among parents worldwide.  Vaccination rates in the UK and Ireland dropped significantly, while rates of measles and mumps skyrocketed, which of course, resulted in deaths and severe injuries.

Numerous studies have since discounted Wakefield’s link between MMR vaccine and autism, and the article was retracted due to fraud and “improper research practices” (see here). Wakefield was eventually found guilty of professional misconduct by the General Medical Council and banned from practicing as a doctor in the UK, as a result of this fraudulent work (here), although he still does speaking engagements in support of his work. His story is used in ethical research classes across the nation to illustrate the destructive power of bad science and the dangers of media misinterpretation of science. However, the damage to the public confidence in vaccines appears to be done. Celebrities like Jenny McCarthy, Donald Trump and Alicia Silverstone continue to be vocal in their support of the anti-vaccination movement, some even citing the now-debunked Wakefield study and “personal experience”. Meanwhile, measles is out here becoming a “thing”.  Again.

As I think about all of this, what comes to mind is something that I tell my students:  Science is based on trust.  I explain to them that the lifeblood of science is trust, and that without trust, research and even Science as we know it would collapse into a pile of spreadsheets and pipet tips.

Trust from one scientist to another: I trust that you will complete this portion of our experiment correctly and efficiently, and that you will not fabricate or change data. Trust between scientific colleagues/community members: I trust that when you publish your work and interpret the findings, that you are making these assertions based on your trustworthy (and expert) opinions. Trust between the government and scientist: I trust that when I give you this multi-million dollar grant, that you will produce high-quality, tangible and useful work in return. And finally, trust between the general public and science/scientists:  I trust that you as a scientist are very intelligent/an expert, and that what you tell me about the world is important and correct.  (As a note, polls show that although the perceived contribution of scientists to society as a whole is much lower than say members of the military and teachers, they are rated by the public as one of the most highly regarded professions; lawyers and politicians are the least esteemed. (See here)  However, other polls have found that while Americans view scientists as highly competent individuals, they are also not trusted, possibly because they are not seen as warm or friendly. (here)  Interestingly enough, the PRC study also found that public esteem of scientists has actually gone down between 2009 and 2013, although it’s unclear whether that is statistically significant. Clearly science has a complicated relationship with society.)

Trust is the reason I get so worked up about the anti-vaccination movement or any movement that is based on anti-science or anti-medicine rhetoric. I should state here that I believe in vaccination of children, and I believe that great science is one of the hallmarks of a thriving society.  But I also know that not every published paper is good science. I know that not every scientist has the best interest of the general public (or even science) at heart. And not only that, I know that biomedical jargon and government mandates are no match for perfectly tanned, rich celebrities and good old-fashioned fear-mongering.

Examine the trajectory of the public opinion on climate change, for example. It wasn’t so long ago that many people simply thought global warming was an incendiary attempt by Al Gore to sell more books.  Although the current public sentiment appears to agree with the concrete scientific evidence for climate change, we still have Americans lawmakers, who not only distrust it, but actively fight against the idea that humans are negatively impacting our planet. So how is the public to know whom to trust?  Or should they trust anyone at all?

Scientists understand the basic tenet of success in research is this: trust no one, especially when he comes bearing gifts of interpretation perfectly aligned with his own agenda and no data to back it up. We poke and prod at arguments and data, mull over what we are told, and decide whether it makes sense to believe it, as we were trained to do.  In this way, we can feel confident in our ability to maintain trust between colleagues, funding organizations, and institutions, and to root out those among us who are not worthy of our confidence. The vast majority of the population does not have this training, thus many simply rely on what the media, their personal experiences, or their favorite celebrity to tell them what to do. In addition, there have been many past and present instances of scientists exhibiting untrustworthy behavior, without the globally known repercussions seen in the Wakefield case. Can we truly blame the public for the waning trust in science and scientists? Should we really be surprised when measles outbreaks begin at amusement parks or politicians pass a bill that ignores climate change? Should we be asking the general public to become more science saavy?  Or should we be asking how science can become more trustworthy?

 

Will actions speak louder than words in the ongoing STEM discussion?

Written by Dr. Stacy-Ann Allen Ramdial

Over the last 10 years the acronym STEM (Science, Technology, Engineering and Math) has become a buzzword in many circles. Is it possible that like many pop culture expressions,  the clever acronym-word duality that is “STEM” will fade into obscurity once its use (or misuse) has been exhausted?

STEM means different things to different audiences with varying degrees of overlap in meaning. For some it excludes any reference to medical professions; for others, it is an all-encompassing term to mean anything remotely related to science. The acronym was first introduced by Judith Ramaley, the director at the National Science foundation, in 2001 for policy making purposes [1]. Since then the term has become the go to buzzword for policymakers, academics, and the public regardless of whether its use is appropriately employed.

I’ve written, debated, read, and listened to the merits of a STEM educated workforce. But as we look towards the 15 year anniversary of the terms coinage, I sometimes wonder if anything profoundly meaningful will come from the conversation.

Don’t get me wrong, a productive conversation is one worth having; however one must ask at some point: has this STEM conversation really been productive considering how much of it has translated into meaningful action? Have we gotten so complacent with the use of the term that we simply employ its use as a policy filibuster or has the definition of STEM become so “muddled” that many of the key stakeholders are frequently and unintentionally talking past each other?

Today more than ever, as we react to the effects of globalization and rapid technological advances, we embrace the idea that without a sustained STEM educated workforce, the U.S. will fall behind as a global leader. This has been highlighted in President Obama’s past and most recent State of the Union address where he has stressed the importance of both preparing students to succeed in the global economy, and supporting a STEM workforce to optimize economic growth.

If this is our commitment, then how many more articles have to be written, debates had, speeches made, and conferences held about the leaky STEM pipeline, the unprepared STEM workforce, the failure to capitalize on the investments made in domestic STEM graduates, the racial/ gender disparities in the STEM workforce, and the wage gap in STEM fields, before we make measurable headway. I could list more of the STEM issues tackled on a daily basis by policymakers, academics and the public, but I won’t belabor the point in this piece as a simple web search will provide a comprehensive background and update on the discussion. However, as a contributor and a benefactor of the ongoing STEM discussion, I have to ask: will STEM lose its conversational prominence and if so will it be due to passivity, pandering, or progress?

1. Donahoe, D. The definition of STEM, Today’s Engineer, December 2013

From HeLa to Henrietta: Recognizing the humanity in genetic material

Henrietta Lacks Cells

Written by Dr. Erika E. Alexander, PhD

On August 27, 2014, the National Institute of Health (NIH) released an update to the current guidelines for scientists who receive NIH funding to study genomics. In the new policy, the NIH mandates that all funded data in genomics be posted online with the intent that the information be accessible to other researchers. Given the recent and heated debate about the ethics of sharing human biological and genetic material within the scientific community, it would appear that the NIH has chosen to bunk with the camp promoting rapid scientific discovery as being paramount over consent. However, you will also find that tucked very neatly within this update, are more specific guidelines for gaining informed consent of the participants who are contributing this genomic data.

As of January 25, 2015, all funding applications to the NIH proposing large-scale human and non-human projects must meet these requirements. Specifically, researchers are now required to tell study participants that their de-identified data (and thus genomic information) may be shared with the scientific community for future research, as well as with the general public. This requirement also applies to research using de-identified cell lines or clinical specimens.

This policy is groundbreaking because previously, researchers were simply required to discuss with potential participants the goals of the current work, and study subjects gave their consent to participate based on this discussion. Because of the vagueness of these requirements, there have also been many instances of human biological data being initially collected (with or without consent) for one study or clinical use, but being shared and used for a multitude of other unapproved applications.  This lack of transparency has lead to widespread mistrust of both the medical and scientific professions, particularly by people of color.

One of the most famous examples of this is the case of Henrietta Lacks (1920-1951). Henrietta was an African-American woman whose cancer cells (denoted by HeLa cells) were used to generate a cell line that has served as the basis for a multitude of groundbreaking work in cancer research. However, Henrietta did not consent to, nor was she even informed of the possibility of the use of her biological material for scientific work before her death at age 31. Likewise, consent was not obtained from any of her family members before or after her death. In fact, for decades, the Lacks family were not even aware that Henrietta’s cells were used for research, despite its ubiquitous use in a variety of places, from molecular biology labs to medical school classrooms. The family of Henrietta Lacks made their vehement objections known to the public and to NIH in 2013, after two researchers sequenced her genome and published her genetic data in a 2012 paper, without the family’s consent. The Poston Collective has covered this story previously; for more information about Henrietta Lacks and the resolution of their case read here and here.

There have been other examples of the use of human biological material being solicited for specific research or clinical purposes, and actually being used for other undisclosed research. For example, in 2012, parents in both Minnesota and Texas sued the states because dried blood samples left over from newborn screening tests were used to create a DNA database, without parental consent. In the Texas case, the settlement required the destruction of 5 million dried blood samples, and in both Texas and Minnesota, resulted in more specific state-level laws requiring informed consent for blood samples retained for research. Read more about these cases here.

In 2010, Arizona State University settled a case brought by the Havasupai tribe of Arizona, paying out $700,000 to the tribe. The tribe alleged that blood samples originally collected for a study on diabetes were actually used in research on mental illness within the tribe and on population genetics. The Havasupai participants were not informed of this potential use of their genetic material and did not consent to their genetic information being published.

Naturally, these examples and others have inspired spirited debate within the scientific community regarding whether informed consent is really necessary with biological material, de-identified or not. Some argue that requiring informed consent is at best difficult to implement, and at worst unfeasible depending on the proposed work. They insist that it will slow down the pace of science, and may bar important research from being done.

I believe that in this day and age, with so many instances of past misconduct and exploitation of people of color, it is essential that the scientific community be seen as upholding certain values. These values include respect of human rights over scientific discovery. In my opinion, it may take a little extra work and time to gain consent from study participants, but it will go a long way to maintaining relationships and inspiring trust within the community. People choose to participate in scientific studies because of the reputation of scientists as honest, trustworthy and unbiased people. As such, it would be to the detriment of the scientific community to be thought of as being careless with biological material or genetic information, or even misleading subjects for their own benefit or agenda. This last point is probably why the NIH has been so proactive in resolving this dispute with the descendants of Henrietta Lacks.

The updated consent policy establishes the NIH as firmly on the side of informed consent and human right to choose what happens to their genetic and biological material, but still values sharing research findings with the rest of the scientific community. It allows the NIH to publicly recognize the humanity in human genetic and biological material.  And in her own way, with the tireless advocacy of her descendants, the life of Henrietta Lacks played a role in not only advancing scientific research, but how science sees the subjects that it depends on: as human.

What do you think?  Is informed consent really necessary for genetic material? What effects do you think the new NIH funding policy will have on science as a whole?  Is this change enough?

Could Tuition-Free Colleges and Universities Help Diversify STEM?

Money pig graduate

Written By Dr. Erika E. Alexander

In recent months, several legislative proposals have been presented that might signal the end of times for college tuition. These proposals have been put forth by legislators in Michigan, New York, Tennessee, Oregon and Mississippi, and would allow students to get a college education at the state or community college of their choice for “free”.

Michigan House Bill No. 5315 (affectionately called The “Pay It Forward bill”) would provide up to 200 in-state students interest-free loans for college tuition at either a 2- or 4-year institution. Once a student has graduated from their institution and attained a position that puts them above the federal poverty line, they are required to pay a fixed percentage of their adjusted gross income into a fund, which will provide for financial aid of future college students. The amount the student would pay depends on what type of school they attended; 2% for community college students, and 4% for public university students. Students would be required to pay this percentage for five years for every year they attended school under the program. This means, a student who attended a Michigan school for five years, would pay 4% of their income into the fund for 25 years.

In New York, the idea is to provide New York residents free tuition to attend a university, college or community college within the SUNY (State University of New York) system. In return, students are required to complete 250 hours of community service a year while enrolled, and commit to stay in New York for five years after graduation, presumably to keep well-educated talent within the state. While costing the state close to $1 billion dollars to implement, the co-sponsors of the NY bill say it will result in $3 billion dollars of community service hours, as well as increased sales and property tax revenue created by students starting their post-graduate lives in the state.

While these proposed programs in Michigan and New York, as well as the programs in Tennessee, Oregon and Mississippi, might encourage students from all walks of life to consider college as an affordable option, the question arises of how this would really change the college population. I argue that these programs would also have the effect of increasing diversity in STEM fields.

One obvious effect of these programs is that free tuition would allow more low-income students to access schools with high quality STEM programs and cutting edge research. These students would get to interact with and be mentored by world-class researchers and faculty, generating many future opportunities to which they may not have previously had access. It would also make the path easier for students who need a little help to strengthen their knowledge of hard sciences, but can’t afford to pay for community college alone. According to a recent report by the Institute for College Access and Success, African-American, Latino, and Native American community college students are more likely to attend schools which do not participate in federal student loan programs. In some states, particularly in the south, more than a fifth of community-college students are denied access to federal loans. This means that in order to gain education, students must pay tuition for these schools out of pocket. Community college tuition has been steadily increasing, as more students see them as a viable alternative to traditional colleges. By removing this barrier to education, students can focus maintaining the program’s GPA requirements and getting the most out of their college experience.

Similarly, removal of the intimidation factor of soaring loan interest rates and crippling debt may encourage other students to follow their passion. The average student might choose a degree in a field that they are not particularly enthused about because they know that their future career will pay enough to keep them living comfortably while they repay student loans. Conversely, scientists generally choose their field for the love of science and knowledge and not the money. Most postdocs can describe in detail the profound sense of dread they experienced upon receipt of their first college loan repayment notice from Sallie Mae. By eliminating the threat of unmanageable future debt, underrepresented students may feel more comfortable pursuing degrees in STEM and even academia.

Another benefit to the programs would be the retention of homegrown talent. While I do advocate seeing the world a bit before settling down, many urban areas would benefit from educated locals staying around. These students could help to make a difference in their own communities, by demonstrating that college is possible and by using their education to make changes. Providing an incentive to attend a great college and work in one’s home state could be particularly tempting to talented students who already have familial obligations. The opportunity to attend these schools close to home for “free” may make the offer one that is too sweet to resist.

I would also posit that by increasing underrepresented minority access to high-quality programs, more role models in STEM would begin to appear. Aspiring scientists of color would see many people who look like them in top positions, demonstrating their passion for their work, and Neil DeGrasse Tyson would become much less of an anomaly. This might inspire younger students of color to pursue their dreams of being an astrophysicist, starting a booming technology startup business, or becoming a star of their own engineering television show. And thus, the cycle would continue, until “underrepresented” is no longer an accurate description of people of color within STEM careers.

For now, this idea of a “free” college education is still within the legislative proposal stage. There are still kinks to work out including: whether/how students should be evaluated for acceptance into the program (GPA, essays, application?) Should schools also be subjected to a rigorous selection process in order to be allowed to participate? Another issue is the seeming dependence (at least in Michigan) upon graduate repayment of loans to sustain the program over the years. How will the governing body ensure that graduates will be able to repay their interest free loans (ie secure employment that puts them “above the poverty line”), and that their repayment will be sufficient to aid future students? Despite these questions, this concept of a free education is still very interesting, and one that just might change the face of STEM and academia.

 

As an aside, there are still free (Really. It’s FREE free) educational options for the curious. One such option is to complete a MOOC. MOOCs (massively open online courses) are free online course taught by video lecture to thousands of people at a time. Topics range from “Developing your Musicianship” (Berklee College of Music) to “Programming Cloud Services for Android Handheld Systems” (Vanderbilt University). The Poston Collective has written about these useful mini-courses before, and you can read more about them here. While these free courses generally don’t result in a traditional degree, they are often taught by industry leaders and can be a great way to keep up with a dynamic career field. Many esteemed institutions of higher learning including Stanford, Harvard and MIT have released free MOOCs.

Walk a mile

Written By Dr. Stacy-Ann Allen-Ramdial

On Thursday May 22, 2014 the House of Representatives Committee on Science Space and Technology held a Markup of H.R. 4186, the Frontiers in Innovation, Research, Science, and Technology (FIRST) Act of 2014, a bill introduced by Representative Lamar Smith, the chair of the Committee. As a proposed substitute for the bipartisan supported America COMPETES Act, which is up for re authorization, the bill has met with widespread criticism from stakeholders in the scientific community. To demonstrate what many of these stakeholders consider significant deficiencies in the bill, democratic members proposed over 20 amendments at the Markup.

As I listened to amendment after amendment get offered and ceremoniously opposed with arguments that seem so out of touch with reality, it was hard to believe that everyone was supposedly aiming for the same goal of advancing Science and Technology. The more I listened, the more I wondered if things change if politicians and basic researchers “walked a mile” in each others shoes.

My observation over the last three months on the hill is that there is skepticism about scientists, science and the scientific process not to mention misinformation regarding the research process among some politicians. This doubt filled mindset greatly influences how, what type, and when research is funded. On the other hand, I’ve often heard colleagues, members of the research community and the public express skepticism and doubt about how little politicians care about the future of science and technology. This mindset is seen when these same stakeholders stop being engaged in the political process because they feel their voices no longer matter. In my unique viewpoint, I have come to believe that more individuals from both sides would do well spending a little time actively learning about each others work first hand.

I believe that a seminar on science policy should be a part of every graduate students training and included as part of that seminar is the opportunity to visit capitol hill to learn about the work done by state representatives and committee staff, or attend a hearing. At the very least I think primary investigators and there students should watch an archived hearing or markup regarding an issue or issues significant to their research and graduate training. On the other hand, I believe it would be very beneficial for members of the various subcommittees to spend a few days visiting a research lab, and not in that formal cursory walk through that so often occurs, but a proper guided visit where they can get a first hand look at the work done by primary investigators, graduate students and their administrative staff.

Maybe I am too much of an optimist, but I really do believe that for us to advance as a nation in Science and Technology we must continue to efficiently align the interests of the research and the legislative community. Walking an honest and reflective mile today can mean a productive STEM future for generations to come.

 

Dr. Allen-Ramdial is currently an intern for the House of Representatives Committee on Science Space and Technology.

STEM and Social Science Go Hand in Hand

Written By Dr. Stacy-Ann Allen-Ramdial 

Photo Credit: http://www.centurius.co.uk/wp-content/uploads/2011/07/point-partnership-ALT.jpg

 

There has been an increase in attention and support for STEM research at both the Institutional and the National level. In today’s global environment where Science and Technology and Research and Development are the driving force for economic development and global competitiveness this change is welcomed and encouraged. However, in our push to expand and strengthen support for STEM research, we must not exclude, or devalue the contributions of non-STEM fields to continued U.S. economic success. Recently, a bill called the The FIRST Act (H.R. 4186), Frontiers in Innovation, Research, Science and Technology Act, of 2014, was approved by the Subcommittee on Research and Technology for consideration by the full Committee on Science Space and Technology. The FIRST Act is a followup to the the America COMPETES Act (H.R. 5116)  of 2010. It would reauthorize funding for the National Science Foundation (NSF), the Office of Science and Technology Policy (OSTP), and the National Institute of Standards and Technology (NIST). The goals of the FIRST Act, according to the co-sponsor and Chairman of the full Committee Lamar Smith, are to:

‘[keep] America first in areas of science and research that are crucial to economic growth [and focus] taxpayer investments for basic research in critical areas such as biology, chemistry, physics, computer science, engineering and mathematics.’

There are many aspects of the bill that seem in opposition to its goals and as a result many  from both STEM and Non-STEM disciplines, while supportive of the goal to advance the U.S’s scientific agenda, are less than happy with the FIRST Act. Of concern are the language, the provisions included and the potential impact of the bill  on overall research progress. Some of these concerns were highlighted inScience Magazine prior to the bill passing the subcommittee markup. One provision of the First Act that gained my attention, was the budgetary allocation to the NSF Social, Behavioral and Economic Sciences (SBE) Directorate and the implications of this for STEM research. The SBE Directorate provides funding for disciplines such as Economics Sociology, Political science and Psychology. At the initial introduction of the bill the allocated budget for the SBE Directorate was $150 million dollars, which reflected a 40% reduction in the budget according to Science Magazine. Since introduction of the bill however, the budget was adjusted to $200 million dollars following an amendment. This amount is the still a considerably small allocation from the 5.8 billion dollars allocated for “research and related activities.” For comparison, the budgetary allocation for the Biological Science Directorate is over $740 million dollars, Computer and Information Science and Engineering Directorate is over $940 million, and the Geosciences Directorate and Mathematical and Physical Sciences Directorate are $1.2 and $1.3 billion dollars respectively. By allocating significantly lower funding for the Social Sciences compared to STEM disciplines, this drives home the idea that Social Science are not as important as STEM disciplines and as a result supports a process of sidelining these disciplines.

STEM disciplines and the Social Sciences go hand in hand. Without Social Science disciplines the significance and the impact of the STEM fields would be harder to grasp. Social Sciences are concerned with issues that affect the lives of individuals, communities and nations as a whole, and how these issues affect growth and development. They help to evaluate the issues of the past and provide the resources for improving the future. Lets look for example at the relationship between disciplines of the Social Sciences and the current conversation on STEM diversity and inclusion. In recent years, increased attention has been paid to the need to improve diversity and inclusion in STEM higher education and the workforce. This is a result of the countless qualitative and quantitative research from disciplines such as Sociology, Education, History, Psychology, Economics and Public Policy that brought to light the fact that socioeconomic conditions and prejudices that disproportionately affect women and underrepresented racial and ethnic groups have a major impact on educational success and workplace advancement in STEM fields and as a result have an impact on U.S. economic prosperity and continued global leadership in Science and Technology. Now that so much attention is being paid to addressing these issues, some of these same disciplines lead the way in providing solutions for addressing the underlying issues that reduce academic persistence and reduce workforce diversity. The is just one of many ways in which the Social Sciences play a major role in the economic development of the United States.

It’s easy to see the benefits and impact of Science and Technology in today’s economy and to encourage supporting STEM disciplines in a time where national success is measured in part by achievements in STEM fields. However, pushing the STEM agenda does not mean ignoring the impact of other disciplines. I hope the FIRST Act will recognize the importance of Social Sciences and acknowledge their contribution to the national success and reflect this appreciation in future budget allocations and rhetoric.