Promoting Human Rights Through Science: What do we do, What can we do, and What’s right to do?


Screenshot of title page

Screenshot of the title page of the article. Please go to the article itself for full description.

“Promoting Human Rights Through Science.” That’s the title of a new article, available today from Science Magazine. (Ironically, unaware of this, today I wore my “March for Science” t-shirt to the office as a “casual Friday” thing.)

Promoting human rights through science
Lauren Segal, Ryan Dz-Wei Chow, Brijesh Kumar, Jenny Nguyen, Kun-Hsing Yu, Jennifer Chen, Emre Ozan Polat, Kaitlyn Elizabeth Porter, Michelle Kelly-Irving, Israel Bimpe, Kristy A. Winter, Runxi Zeng, Majid Ahmed, Dustin Ray Saalman, Joshua Isaac James, Michal Kosinski, Easton R. White, Fernanda S. Oda, Hope Bretscher, Perrine Hamel, Swati Negi, Ali Jawaid
Science 06 Oct 2017:
Vol. 358, Issue 6359, pp. 34-37
DOI: 10.1126/science.aaq1083
http://science.sciencemag.org/content/358/6359/34

I know for myself, it has always been important to me to have my work include opportunities for advocacy for others, a chance to make a difference, to better lives. In the Dentistry Library, we worked to support outreach, information, education, research, and clinical work in the last major social healthcare frontier in the USA. In my job as the Emerging Tech Informationist I am able to be part of the conversations around adopting and developing new technologies and keep the questions in mind of how patients and the public are being included, and how technologies create new disabilities even as they create new opportunities. As a researcher, I work to the best of my ability to ensure that my work has the potential to not only inform interesting questions, but to empower others to apply our work and methods in their own environments. I try to publish in open access journals, I try to use open source tools. I try to make my methods crystal clear and replicable. I try to share my data. I try to partner, widely, and sometimes that means compromising and negotiating and educating around issues of intellectual property, access, openness, transparency, and so forth.

In today’s SCIENCE article, these are the human rights they highlighted:

Right to food
Right to health
Right to be remembered
Right to information
Right to education
Right to privacy
Right to a healthy environment
Right to culture

Of course, by far the most populous section was “The Right to Health,” with discussions of communities, cultural context, disparities, vaccines, delayed diagnosis, disasters, social determinants of health, health literacy, and policy loopholes that can be exploited in ways that undermine health rather than promote it. Powerful stuff.

We need to push this out, especially those of us on social media. This is the sort of thing that directly impacts on how the public view science and scientists, and thus has the potential to downstream impact on funding. But that can’t happen unless the public is aware of this, so it’s important to get this out beyond the Academy. It’s important for us to expand upon this, to tell our own stories of why human rights matter to us, why science matters to us. Just as with poets, and pop singers, and athletes, most of us aren’t doing this to get rich, and most of us won’t get rich. Most of us do research because we want to make a difference, we love the science and research and learning new things, and we see exciting opportunities when we place those side by side. How can we help the general public see that in each of us, and in science overall?

More important, can we use articles like this, stories like these to engage with the public in conversations around these topics. Are the rights mentioned here the ones that are actually important to the people around us, and to our society at large? If so, how do we tell those stories so that they see we’re there, too? If not, why not? Is there something people need to know that they don’t? Is there something they know that we don’t? I’m a big fan of the Cochrane Collaboration’s efforts to include patients on the research teams, not only to inform the process and to support “translation” of findings into practice, but perhaps most importantly to shape what questions are asked and studied, to help assure that these are the problems that really matter. Making the stories of science and scientists widely available and engaging with the public around them is the first step in entending that model into all of science. You can help. Share this article, talk about it, challenge it, ask questions, ask for more.

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2 responses to “Promoting Human Rights Through Science: What do we do, What can we do, and What’s right to do?

  1. There is little more important (to us) than promoting human rights. Thanks!

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  2. As well as Cochrane, various health technology assessment (HTA) organisations also have patient input/panels, as does NICE in the UK. The motto the disabled use can be used for all patients – no decision about me without me.

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