ELSI - Biographies

Biographies - Event Organisers

 

Dr Angeline Ferdinand

Dr Angeline Ferdinand BA, MPH, PhD has had a wide-ranging academic career that has focused on applied research that addresses complex problems of health equity, social determinants of health and the implications of new technologies in public health practice. Her research encompasses health program evaluation across a range of areas, in particular Aboriginal and Torres Strait Islander health and migrant and refugee health. She has undertaken health program evaluations that span the breadth of local, national and international approaches. This includes complex place-based programs to improve the mental health of migrant and Aboriginal communities by addressing racism; a national-level evaluation to assess the delivery of disability services for Aboriginal families and communities; and an examination of genetic health services provision for Aboriginal and Torres Strait Islander communities.  Angeline has authored more than two dozen publications (3 in the top 5% of all research outputs scored by Altmetric) and has attracted approximately 1.2million AUD in competitive research funding (in addition to two prestigious national doctoral scholarships).

 

Dr Evie Kendal

Dr Evie Kendal is a bioethicist and public health researcher at the Department of Health Science and Biostatistics, Faculty of Health, Arts and Design, Swinburne University of Technology. Evie’s research interests include ethical dilemmas in emerging biotechnologies, space ethics, and public health ethics.

 Professor Margaret Kelaher

Professor Margaret Kelaher passed away unexpectedly in March 2021.  She founded and led the Evaluation and Implementation Science Unit at the Centre for Health Policy, School of Population and Global Health University of Melbourne. She established an international reputation in research to support and improve the implementation of health system reform. Over the last 5 years she led a program of work to develop health services research in genomic medicine with a particular focus on improving access and quality to clinical services care for Aboriginal and Torres Strait Islander people. She was recently awarded an MRFF grant to continue this work. She received $51 million in competitive funding over her career, published over 145 peer reviewed publication and 203 reports. Her achievements have been recognised with an NHMRC Sidney Sax Fellowship, Australian Young Tall Poppy award, NHMRC Career Development award, VicHealth senior research fellowship and an ARC Future fellowship.

Biographies - Presenters

 

Chief Lynn Malerba

Chief Mutáwi Mutáhash (Many Hearts) Marilynn “Lynn” Malerba became the 18th Chief of the Mohegan Tribe on August 15, 2010, and is the first female Chief in the tribe’s modern history.  The position is a lifetime appointment made by the Tribe’s Council of Elders.  Lynn follows in footsteps of many strong female role models in the Mohegan Tribe, including her mother, Loretta Roberge, who holds the position of Tribal Nonner (elder female of respect) as well as her great-grandfather Chief Matagha (Burrill Fielding).  Prior to becoming Chief, she served as Chairwoman of the Tribal Council, and served in Tribal Government as Executive Director of Health and Human Services.  Preceding her work for the for the Mohegan Tribe, Lynn had a lengthy career as a registered nurse ultimately as the Director of Cardiology and Pulmonary Services at Lawrence & Memorial Hospital.   She earned a doctor of Nursing Practice at Yale University, named a Jonas Scholar.  She was awarded an honorary Doctoral degree in Science from Eastern Connecticut State University and an honorary Doctoral Degree in Humane Letters from the University of St. Joseph in West Hartford, CT.  She earned a Master’s Degree in Public Administration from the University of Connecticut and a Bachelor of Science in Nursing from the College of St. Joseph.

She is Chairwoman of the Tribal Self-Governance Advisory Committee of the Federal Indian Health Service (IHS), a member of the Justice Department’s Tribal Nations Leadership Council, a member of the Tribal Advisory Committee for the National Institute of Health, a member of the Treasury Tribal Advisory Committee.  She serves as the United South and Eastern Tribes Board of Directors Secretary.

Locally she serves as a Trustee for Chelsea Groton Bank, Board Member for the Community Foundation of Eastern Connecticut,  and on the Provost’s Advisory Committee Member for the Harvard University Native American Program

She published “The Effects of Sequestration on Indian Health Funding” in the Hastings Center Report, Nov-Dec. 2013 and authored two chapters in “American Indian Health and Nursing” Ed. Margaret P. Moss, Springer Publishing Company.

She lives in Niantic with her husband Paul. They are the parents of two adult daughters, Elizabeth and Angela and grandparents of granddaughter Taylor and grandson Connor.

 

Ms Kristy Meiselbach

Kristy Meiselbach is a proud Gunditjmara woman and research assistant in the Evaluation and Implementation Science unit.  She completed a biomedical degree with honours at RMIT and The University of Melbourne before beginning a medical degree at Deakin.

Kristy deferred her medical degree to join the Evaluation and Implementation Science team in 2019.

She has a passion for public health in particular helping rectify inequities in Aboriginal and Torres Strait Islander communities' access to various areas of healthcare.

Her main area of research is the evaluation of the Victorian cervical cancer self-collection pathway in Aboriginal Community Controlled Health Organisations.

 

Dr Aida Falcon de Vargas

Dr Aida Falcon de Vargas is a Venezuelan Medical Doctor. Medical studies and Post Graduate degree of Internal Medicine at the Medical Faculty Universidad Central de Venezuela. Postgraduate studies and Lecturer in Medical Genetics at the Great Ormond Street Hospital, formerly the Hospital for Sick Children, London. PhD degree in Human Genetics, University of London, London, UK. Former Director Medical Genetics Unit , Hospital Vargas de Caracas, Vargas Medical School. Universidad Central de Venezuela. Caracas, Venezuela. Past President Venezuelan Genetics Society. Past President Latin American Network of Human Genetics (RELAGH). Faculty Member Latin American School of Human Genetics. (ELAGH). Current President Venezuelan Human Genetics Society. Fellow American College of Physicians. Corresponding Fellow American College of Medical Genetics and Genomics. Emeritus Member American Society of Human Genetics. Member Scientific Committee of the Human Variome Project -UNESCO and The International Federation of Human Genetics. Coordinator Venezuelan Node Human Variome Project. Member Latin American Biological Dosimetry Network (LBDNet).

Expertise in Research in Internal Medicine, Clinical Genetics, Population Genetics. Cancer Genetics. Bio dosimetry. DNA Repair Damage. Genetic Counseling. Clinical Research. Clinical Research Projects. Scientific Committees. Management of Health Services. Bioethics. Epigenetics. Genetics, Epidemiology and Public Health. 196 scientific publications, 56 in international journals, and 135 in regional and national journals. 26 chapters in scientific books. Bio-medical editor of 18 national and international publications.

 

Professor Clement Adebamowo

I direct the Fogarty funded Bioethics Training program which provides short, medium and long duration training in Research Ethics in Nigeria

As PI of the NIH funded Indigene Project, I conduct research into the use of indigenous educational concepts to improve comprehension on informed consent in genomics and cancer research in Africa.

I am the PI of the NIH funded African Collaborative Center for Microbiome and Genomics Research (ACCME) and the African Female Breast Cancer Epidemiology (AFBRECANE) projects which conducts research on persistent high-risk HPV infection, cervical and breast cancer.

I am foundational chair of the Nigerian National Health Research Ethics Committee (NHREC) for 10 years and I am a member of the Advisory Committee of Research Ethics training programs in Kenya, Myanmar, Ghana and the US.

 

Dr Gareth Baynam

Gareth Baynam is a clinical geneticist, genomic policy advisor, patient advocate and clinician scientist. He equitably implements innovations through multi-stakeholder partnerships. He Directs, Chairs, or is on the Executive for international initiatives to improve the lives of children and youth living with genetic, rare and undiagnosed diseases, congenital anomalies and cerebral palsy. He has clinically led the state-wide implementation of genomic and phenotypic technologies, data sharing initiatives, digital health platforms, and omics-associated policy. He initiated the Undiagnosed Diseases Program, WA – an interdisciplinary approach for the most challenging medical mysteries. He is a clinical Prof or A/Prof at multiple universities in Western Australia and Victoria. He is a Founding Director of the Undiagnosed Network International which is approaching global coverage, including for developing countries. Gareth Chairs the Diagnostics Scientific Committee of the International Rare Diseases Research Consortium and is a Governance Board member of the National Centre for Indigenous Genomics.

He leads a number of Aboriginal precision health projects. Gareth is a Director of the Academy of Child and Adolescent Health, and a member of the WA Ministerial Council for Precision Health.  He is the Founder of Project Y, Pilbara Faces, Cliniface, Lyfe Languages and The Suspense is Killing Me  which are initiatives to support precision public health.

 

A/Prof Donna Cormack

Associate Professor Donna Cormack has whakapapa to Kāi Tahu and Kāti Māmoe. She is a researcher and teacher at Te Kupenga Hauora Māori at the University of Auckland.

Donna’s research focuses on racism and its impacts on health, issues of data sovereignty and data justice, and transformative and anti-colonial approaches to research and teaching in Māori health.

 

Ms Hana Burgess

Hana Burgess has whakapapa to Ngāpuhi, Te Roroa, Te Ātihaunui a Pāpārangi, and Ngāti Tūwharetoa. Currently living and creating in Tāmaki Makaurau, her research interests are around Māori futurisms. Namely, how through being in good relation with our tūpuna and mokopuna we can navigate shifts in science and technology, and envision futures desire.

She explores Māori futurisms through her PhD research in genomics, and her collaborative art practices alongside Māori creatives based in Tāmaki.

 

A/Prof Jeffrey M Craig

Associate Professor Jeff Craig is a Lecturer in Medical Sciences at the Deakin University School of Medicine. He studies epigenetics – the ‘musicians that play the music of life on our DNA’. He researches the role of epigenetic state in mediating the effects of early life environment on the risk for neurodevelopmental disorders such as autism, ADHD, cerebral palsy, social anxiety disorder, and developmental coordination disorder. He has expertise in biosample collection, twin studies, and science communication. With clinicians and epidemiologists, he has established a number of longitudinal cohorts, most involving twins. In his longest-running cohort, he is currently studying the relationship between early life epigenetic state and brain structure and function in late childhood. A/Prof Craig is a Chief Investigator on the NHMRC-funded Twins Centre of Research Excellence and President of the International Society for Twin Studies.

He has a keen interest in public engagement, and in this capacity, leads the cross-faculty ‘Gen(e)quality’ Deakin University Research Network. In 2019 he is co-chairing organising two international conferences on the early life origins of disease and twins. He is currently Course Director of the Honours program at the Deakin School of Medicine.

 

Dr Santa Slokenberga

Santa Slokenberga is a researcher at Uppsala University (Sweden). Her current research focuses on regulating the standards of medical care and scientific uncertainty. Her other research interests include ELSI in human genetics and genomics.

She is particularly interested in the governance of the new and emerging technologies in this field, specifically the limits of competence and authority the involved actors and their overlapping competences.

 

Mr Jordan Parsons

Jordan is a PhD candidate at Bristol Medical School in the UK. His doctoral research concerns 'best interests' decisions in nephrology, with a focus on dialysis. Through an empirical bioethics project, Jordan is questioning if and when it is in the best interests of a patient with end-stage kidney disease who lacks decision-making capacity to forego dialysis in favour of conservative management.

Alongside his PhD, Jordan is currently engaged in a body of work exploring the (potential) role of telemedicine in the provision of early medical abortion. His book on this - 'Early Medical Abortion, Equality of Access, and the Telemedical Imperative' - will be published later this year with Oxford University Press (co-authored with Elizabeth Chloe Romanis of Durham University).

Jordan's other research interests lie in organ donation/transplantation ethics, HIV prevention, genetic privacy, prisoner health, and telemedicine.

 

Ms Santa Slokenberga

Santa Slokenberga is a researcher at Uppsala University (Sweden). Her current research focuses on regulating the standards of medical care and scientific uncertainty. Her other research interests include ELSI in human genetics and genomics.

She is particularly interested in the governance of the new and emerging technologies in this field, specifically the limits of competence and authority the involved actors and their overlapping competences.

 

Dr Stephanie Dyke

Dr. Stephanie Dyke’s research experience spans biochemistry, science communication, bioethics and science policy. She has worked for a national bioethics advisory council, the Irish Council for Bioethics (2005-08), as policy adviser at the Wellcome Trust Sanger Institute (2008-13), and at the Francis Crick Institute (2013-14).

Stephanie joined McGill University in 2014, where she has been conducting ethics and policy research focusing on data sharing policy with large international collaborations, such as the Global Alliance for Genomics and Health (GA4GH) and the International Human Epigenome Consortium (IHEC). She spent 4 years at the Centre of Genomics and Policy in McGill’s Department of Human Genetics, and in 2018, joined the Neuro and McGill Centre for Integrative Neuroscience (MCIN) to focus on ethics and policy in the neurosciences and its Open Science plans.

Stephanie co-chairs the GA4GH Data Use & Researcher Identities Workstream and is a member of several other GA4GH workstreams, IHEC Bioethics and Communications Workgroups, and the Canadian Open Neuroscience Platform (CONP). She also serves as a member of the NHLBI Observational Study Monitoring Board for the Myelodysplastic Syndromes Natural History Study. Previously, Stephanie served as Chair of McGill Epigenome Mapping Centre Data Access Committee (2016-18) and as a member of the International Cancer Genome Consortium Ethics and Policy Committee (2009-13).

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