Dr. Aisling de Paor, Lecturer in Law at Dublin City University and Honorary Fellow at the Burton Blatt, Syracuse University, New York has recently been awarded a Royal Irish Academy Charlemont Grant to travel to the Burton Blatt Institute in June 2018.

While at the Burton Blatt Institute she will collaborate with Professor Peter Blanck on a research project entitled ‘Gene editing, disability and the UN Convention on the Rights of Persons with Disabilities – emerging law and policy perspectives.’ This research highlights the concerns raised as genetic science and technology advances, including the consequences for disability rights. On examining international human rights perspectives, it looks particularly at the United Nations (UN) Convention on the Rights of Persons with Disabilities and how it can be applied to develop best practice in this area. It will focus on cutting edge developments in the field of gene editing and the ethical, legal and regulatory concerns that are quickly emerging in this area.

CRISPR/Cas 9 is a gene-editing technology at the cutting edge of science and medicine, and is gaining attention worldwide. CRISPR/Cas 9 may ultimately be used to eradicate serious disease, such as hereditary neurological conditions, cystic fibrosis and different types of cancer, thereby preventing genetic- based disease, with consequences for future generations. It therefore has wide-ranging implications for medicine, society and the human race. Recent developments in the area of gene editing (in the United States, United Kingdom and elsewhere) signal significant advances and growing application of this new technology in the future.

Although offering substantial opportunities for understanding health and medicine, the emergence of gene- editing highlights a minefield of ethical, legal and practical challenges in both clinical and commercial contexts, and in society. In addition to the safety concerns arising with these genetic techniques and the unknown medical implications of gene editing for future generations, there are many ethical and legal questions arising. One concern centres on the potential trend towards embracing ‘designer babies’ and facilitating the selection of embryos based upon genetic desirability. In addition to offering the possibility of eradicating human disease, developments in gene editing open the door to engineering the genetic makeup of children and selecting traits and characteristics such as hair and eye colour, intelligence, or sporting ability. Disability perspectives are particularly relevant in this area. Advances in the field of genetics provide a new lens to view, identify and now eradicate disability. With developing gene- editing technologies there is a concern that the technology will be used to screen out disability, difference and diversity in society, provoking a range of human rights concerns for persons with (current and future) disabilities.

A regulatory vacuum in this area signals the need for caution and there is a growing need to address the complex ethical and legal concerns that accompany use of these new technologies. This research will examine the need for regulation to prevent misuse of these new technologies and also to facilitate safe and ethical scientific advances. In addition, it will identify further strategies for addressing this area, such as awareness raising and education, and public consultation and engagement on these issues. The proposed research will make a valuable law and policy contribution to this area, particularly in presenting disability perspectives, and in using the UN Convention on the Rights of Persons with Disabilities as a tool to guide best practice in this area. This collaboration between Dr. de Paor of Dublin City University and Prof. Blanck of the Burton Blatt Institute, Syracuse University will strengthen the research base in Ireland and the United States, and contribute to knowledge and policy-making in this field.

While visiting the Burton Blatt Institute, Aisling will also give a research seminar to the faculty at the Burton Blatt Institute, and other academics and students at Syracuse University on the topic of genetics law and policy, specifically on gene editing, disability and the UN Convention on the Rights of Persons with Disabilities.

Norway disability researcher and advocate, G. Anthony Giannoumis, has been appointed a Burton Blatt Institute (BBI) Visiting International Research Fellow . Mr. Giannoumis will be instrumental to the research team at BBI on the Global Public Inclusive Infrastructure – Automated Personalization Computing Project (GPII-APCP).

Anthony’s research focuses on technology law and policy. He is currently researching the implementation of policies aimed at ensuring equal access to technology. His research interests include universal design, international governance, social regulation, and standardization, and he has also conducted research on assistive technology, and intellectual property.

He is currently an assistant professor of universal design at the Department of Computer Science at Oslo and Akershus University College, a researcher with DISCIT – making persons with disabilities full citizens, and a legal and ethical advisor for Cloud4All – Cloud platforms lead to open and universal access for people with disabilities and for all. He is also a PhD candidate at the Faculty of Law at Maastricht University.

Anthony has previously been awarded a Marie Curie Fellowship and has been a visiting researcher and guest lecturer at Syracuse University, the University of Ireland, Galway, the University of Ireland, Maynooth, the Communications University of China, the University of Rome and the University of Padua.

His research is interdisciplinary, located at the intersection of disability, technology, and design. It is focused on issues of equity and access to technology and he approaches this from both theoretical and empirical perspectives. His research currently has three primary, interrelated foci: (1) The exploration of how constructions of disability and technology affect access to education; (2) Inquiry into the accessibility of Internet technologies; and (3) Design and development research on access to education via mobile technology and mobile learning.

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Luis Columna, a native of San Juan Puerto Rico, is currently an Associate Professor in the Exercise Science Department at Syracuse University. Prior to coming to Syracuse, Professor Columna was an Associate Professor at SUNY Cortland, NY. He is proud to be one of a few Hispanic Physical Education faculty at a Carnegie Classified RU/H Research University. Throughout his doctoral studies, he taught adapted physical education in the Denton, TX public schools.  His research focuses on ways to increase the participation of families (especially Hispanic) of children with disabilities into physical activity and also his research focuses on ways to better prepare teachers to work with diverse populations. Columna is committed to providing service learning opportunities for students, which he does through the Cortland Adapted Swim Team, the Migrant Education Outreach Program, and SUNY Upstate Medical group visits. He also infuses Spanish and sign language into his courses so that students will develop important cross-cultural communication skills. Luis was the recipient of the “Leadership in Civic Engagement” award at SUNY Cortland.

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Jason Benetti (born September 9, 1983) is an American sportscaster. Since 2016 he has been employed as a television play-by-play announcer for Chicago White Sox home games.^[1] He also acts as a play-by-play broadcaster for ESPN, Fox Sports, Westwood One, and Time Warner covering football, baseball, lacrosse, hockey, and basketball.

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James Abbott is a recording engineer, educator, audio technology consultant, programmer, electronics designer, and musician. He has engineered, edited, and mastered more than 50 commercially released recordings in various genres.

His work can be heard on NPR, PBS, Centaur Records, New World Records, Sony, Composer’s Recordings (CRI), Albany, GM, Sanctuary Classics (Black Box), Victor, Mark Records, Innova, Naxos, Koch Classics, Raven Records, Summit, Warner Brothers, and Endeavor Classics. His clients include many well known ensembles, organizations, and musicians, including the Syracuse Children’s Chorus, Boston Brass, Albany Symphony, Cassatt String Quartet, Corigliano String Quartet, Thomas Lanners, Glimmerglass Opera, Cleveland Chamber Symphony, Civic Morning Musicals, Syracuse Society for New Music, Andrew Russo, David Cossin, and Hilary Hahn.

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Focuses on disability issues in employment and labor law, particularly the Americans with Disabilities Act and its relationship to other laws and social policies. She also studies alternative work arrangements such as contingent work, and the connections between workplace experiences and political participation. Her work has appeared in the Industrial and Labor Relations Review, Social Science Quarterly, Political Research Quarterly, Industrial Relations and other journals.

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Gerard Quinn is Professor Emeritus in law at the National University of Ireland (Galway).  He holds degrees in political science (B.A.) and law (LL.B.) from the National University, is a qualified barrister-at-law (B.L., Kings’ Inns) and a graduate of Harvard Law School (LL.M., S.J.D.).

He has had a varied career in public service.  He was a former Director of Research at the Irish Government’s Law Reform Commission and has served two terms on the Irish Human Rights Commission.  He has served on other Government bodies such as the Ministry of Foreign Affairs Joint Committee on human rights and the Government’s Commission on the Status of Persons with Disabilities.  He is currently a Presidential appointee to the Council of State which provides constitutional law advice to the President of Ireland.

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Robert S. Olick, J.D., Ph.D., is Associate Professor of Bioethics and Humanities. He earned his law degree at Duke University and his doctorate in philosophy and bioethics at Georgetown University and the Kennedy Institute of Ethics. Before joining the Center in 2001, he taught in the Colleges of Medicine and Law at the University of Iowa, and served as Executive Director of the New Jersey Bioethics Commission where he was involved in the crafting of public policy, reports and educational initiatives on a range of bioethical issues, in particular advance directives for health care, determination of death and decisions near the end of life, ethics committees and assisted reproductive technologies.

Dr. Olick chairs the University Hospital Ethics Committee and serves on its Ethics Consultation Service. He is Managing Editor of the Center’s Bioethics in Brief newsletter.

Dr. Olick teaches bioethics for both first and third-year medical students and for allied health professional students, and directs the Responsible Conduct of Scientific Research course required for all graduate students. He directed the Ethical, Legal and Social Issues in Medicine (ELSIM, which was replaced with Excellence in Care in 2015) component of the Practice of Medicine course, required for all first-year medical students from 2001-2014. He has also taught courses on medical professionalism, decisions near the end of life, and Bioethics and the Law, and Genetics, Disability and Law through the Consortium for Culture and Medicine.

Dr. Olick’s research interests include decisions near the end of life, medical futility, physician-assisted suicide, the physician-patient relationship, informed consent, adolescent decision making, the limits of confidentiality, genomic medicine, reprogenetics, genetic privacy and discrimination, and research with adults with intellectual disability.

He is the author of Taking Advance Directives Seriously: Prospective Autonomy and Decisions Near the End of Life(Georgetown Univ. Press, 2001, 2004) and the co-author (with Robert Weir) of The Stored Tissue Issue: Biomedical Research, Ethics, and Law in the Era of Molecular Genetics (Oxford Univ. Press, 2004).

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Dr. Ynesse Abdul-Malak was born in Haiti and immigrated to the United States at the age of thirteen. Dr. Abdul-Malak overcame overwhelming obstacles to become a first-generation college graduate. She obtained an AAS degree in nursing and practiced as a nurse in Staten Island, NY; therein after moving to Lebanon with her husband and family, Dr. Abdul-Malak obtained a BS in Environmental Health and a Master’s degree in Public Health at the American University of Beirut. She then moved to Syracuse and worked as a research scientist at Upstate Medical University. She then enrolled at Syracuse University and obtained a Master’s and PhD in Sociology.

Dr. Abdul-Malak’s work focuses on understanding how social structures impact the aging processes of individuals over the course of one’s life-with a special emphasis on U.S Caribbean immigrants.  She is a co-editor of Grandparenting in the U.S. (2016), with Baywood Publishing. Moreover, Dr. Abdul-Malak is currently interviewing grandparents of grandchildren with disabilities for a co-authored book manuscript, Grandparenting Children with Disabilities (Springer Publishing).  To date, Dr. Abdul-Malak has presented her research here in the United States and internationally. In addition to researching and publishing, she enjoys teaching courses on race, aging, gender, immigration, and research methodology. One of Dr. Abdul-Malak’s main research investigates how country of origin, early life events, and context of reception in the United States impact immigrant health, in the aim of shedding light on health disparities among various minority groups. She is a proud recipient of the Outstanding Teaching Assistant award and Best Doctoral Prize at Syracuse University.

At BBI, Dr. Abdul-Malak’s work examines factors that impact the inclusion of people with disabilities in educational and employment settings. Through a sociological lens, she investigates how disability is constructed by the way society is organized and creates barriers based on attitudes, stereotypes, and ableism. Additionally, her work explores the intersectionality of disability, gender, sexuality, race, ethnicity, and economic status and its impact on an inclusive workforce.

Books

(In Progress) – Harrington Meyer, Madonna and Abdul-Malak, Grandparenting Children with  Disabilities.  Under contract with Springer Publications

2016 – Harrington Meyer, Madonna and Abdul-Malak, Ynesse (Ed).  Grandparenting in the  U.S.  Baywood Publishing.