PSB 2020 Keynotes

Carole Goble
Carole Goble
  • Professor of Computer Science
  • The University of Manchester


Building the FAIR Research Commons for Life Sciences: the pain, the glory

In 1996 the 1st PSB ran a workshop on “Internet Tools for Computational Biology” as the “internet makes tools available to researchers and students world-wide” and “the burst of World Wide Web has accomplished to make data accessible on networks” (it turned out that the web thing was pretty useful). Later PSBs picked up on metadata, ontologies and workflows for integration and reuse; and on reproducibility and data sharing in open science. Where are we in 2020? The FAIR Research Commons: Findable Accessable Interoperable Reusable shared spaces for research data, software, computational workflows, scripts (in fact any kind of “Research Object”). Plus ça change.

In this talk I will ruminate and reflect on a collection of initiatives I am very involved in that are attempting to build “a” or “the” FAIR Research Common for Life Sciences. Some are bottom-up, building infrastructures that support investigator-led projects or building communities of practice for standards (like the Common Workflow Language, Bioschemas and BioCompute Object). Some are top-down like the major European Research Infrastructures for Life Science data, the European Open Science Cloud and the NIH Data Commons. Some are policy organisations such as the RDA, G7 and OECD. We have some great examples of best FAIR practice, some not so great and some hard won lessons (spoiler alert: mandates work, hopes for community socialisation don’t). In 25 years we have got somewhere. What about the next 25 years?

Biography

Over the past 25 years Carole has pursued research interests in the acceleration of FAIR scientific innovation through: distributed computing, workflows and automation; knowledge management and the Semantic Web; social, virtual environments; software engineering for scientific software; and new models of scholarship for data-intensive science. Since 2001 she has directed a large, mixed team of researchers, computational scientists and software engineers that specialise in e-Science.

As an applied computer scientist she has always worked alongside other disciplines. She pioneered ontology-based systems for data and model curation, the integration biology data resources and provenance. She has applied the state of the art in distributed, service-based computing and social collaboration to the sciences, notably the Life Sciences and Biodiversity. She is responsible for many widely used open source e-Science software, including the Taverna workflow system and the myExperiment workflow sharing platform. She has been an advocate for putting software innovations into real practice. She co-founded the Software Sustainability Institute UK.

Carole is currently leading activities in European e-Infrastructure for Life Sciences and on the European Open Science Cloud (EOSC). She is Head of the UK Node of ELIXIR, the pan-European Research Infrastructure for Life Science Data; co-leads the Interoperability Platform for ELIXIR and coordinates the multi-institutional FAIRDOM initiative for FAIR asset management for Systems and Synthetic Biology projects. The FAIRDOM infrastructure is the basis of asset management for the IBISBA European Infrastructure for Industrial Biotechnology and the EOSC Life workflow collaboratory. She co-leads the Research Object initiative to support asset exchange and reproducibility, notably for workflows, and sponsors the ELIXIR supported Bioschemas metadata markup for life science web resources. She is a partner of the BioExcel Centre of Excellence for biomolecular simulation, and a champion for the Common Workflow Language, Bioschemas and BioCompute Object initiatives.

She is a co-author of the seminal 2016 FAIR Guiding Principles article and a partner of the FAIRPlus project aiming at FAIRifying pharmaceutical company datasets.

Carole has served on numerous committees and currently serves in the G7 Open Science Working Group as the UK expert. In 2008 she was awarded the Microsoft Jim Gray e-Science award for contributions to e-Science and in 2010 was elected a Fellow of the Royal Academy of Engineering. In 2014 she was awarded the Commander of the Order of the British Empire for services to Science.


Ifeoma Ajunwa
Ifeoma Ajunwa, JD, PhD
  • Assistant Professor of Labor and Employment Law, Cornell University
  • Associated Faculty Member at Cornell Law School
  • Faculty Associate at the Berkman Klein Center at Harvard Law School
  • Affiliate of the Center for the Study of Inequality at Cornell University


Valid or Invalid?: Genetic Data as part of Workplace Wellness Programs

The advent of genetic testing has been a boon to preventative medicine. The benefits of genetic testing include the discovery of propensity for disease and the possibility of early intervention for deadly childhood diseases such as Tay-Sachs, cystic fibrosis, and sickle cell anemia. However, genetic determinism, which is the public perception that genetic mutations inevitably lead to future disease could open the door for employment discrimination based on an employee’s genetic information. Although the Genetic Information Non-Discrimination Act (GINA) became law in 2009, several carve-outs had already undermined the effectiveness of that law – for example exceptions to GINA allow for lawful discrimination against those with genetic propensity of disease when those individuals seek to purchase life insurance, disability, or long-term care insurance. Now with a proposed bill (the HR 1313 bill) that would allow employers to, in effect, mandate the genetic testing of their employers, it is time for American society to answer these question: Should the collection of genetic data play a part in workplace wellness programs? If so, what governance regimes are necessary to maintain equal opportunity in employment and preserve the health privacy of workers?

Biography

A 2018 recipient of the Derrick A. Bell Award from the Association of American Law Schools, Dr. Ajunwa is an Assistant Professor of Labor and Employment Law in the Law, Labor Relations, and History Department of Cornell University’s Industrial and Labor Relations School (ILR), and Associated Faculty Member at Cornell Law School. She is also a Faculty Associate at the Berkman Klein Center at Harvard Law School and an Affiliate of the Center for the Study of Inequality at Cornell University. Dr. Ajunwa’s research interests are at the intersection of law and technology with a particular focus on the ethical governance of workplace technologies. Her research focus is also on diversity and inclusion in the labor market and the workplace.

Dr. Ajunwa earned a Ph.D. in Sociology at Columbia University in the City of New York (emphasis on Organizational Theory and Law and Society). Her doctoral research on reentry received a grant from the National Science Foundation (NSF) and honorable mention from the Ford Foundation. Prior to graduate school, she also earned a law degree from the University of San Francisco School of Law and Dr. Ajunwa has been admitted to the Bar in the states of New York and California.

Dr. Ajunwa’s scholarly articles have been published or are forthcoming in both top law review and peer review publications including the Fordham Law Review, the California Law Review, the Northwestern Law Review, the Harvard Civil Rights-Civil Liberties Law Review, The Berkeley Journal of Employment and Labor Law, Cardozo Law Review, the Journal of Law, Medicine, and Ethics, and in Research in the Sociology of Work, among others. Dr. Ajunwa has been invited to present her work before governmental agencies such as the Consumer Financial Protection Bureau (the CFPB), the Equal Employment Opportunity Commission (the EEOC), and has served as a keynote speaker at several national and international conferences. Dr. Ajunwa’s law review paper, Limitless Worker Surveillance, (with Kate Crawford and Jason Schultz) has been downloaded more than 3,000 times on SSRN and was endorsed by the NYTimes Editorial Board.