Anna Middleton

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Anna Middleton
Anna Middleton.jpg
Anna Middleton in 2019
Alma mater University of Leeds (PhD)
Scientific career
Institutions National Health Service
Wellcome Sanger Institute
Connecting Science
University of Cambridge
Thesis Attitudes of deaf adults and hearing parents of deaf children towards issues surrounding genetic testing for deafness  (2000)
Website societyandethicsresearch.wellcomeconnectingscience.org/staff/anna-middleton

Anna Middleton is a social scientist and genetic counsellor. She is Associate Director for Engagement and Society within Wellcome Connecting Science, based on the Wellcome Genome Campus. She is also the Director of the Kavli Centre for Ethics, Science, and the Public at the University of Cambridge.

Contents

Education

Middleton completed her undergraduate studies in genetics at Newcastle University, before undertaking a MSc in Genetic Counselling at the University of Manchester. [1] She completed a PhD at the School of Psychology and Research School of Medicine at the University of Leeds in 2000. [1] Her PhD is in genetics and psychology, and explored the attitudes of Deaf adults and hearing parents of deaf children towards issues surrounding genetic testing for deafness. Anna was the first person to publish empirical data on the attitudes of Deaf parents towards using pre-natal testing for deafness, with the preference for having deaf children. [2] [3]

Middleton obtained her registration as a Genetic Counsellor with the Genetic Counselling Registration Board UK and Republic of Ireland in 2003. [4]

Career and research

Middleton joined the Sanger Institute in 2010, contributing ethics input into the Deciphering Developmental Disorders project by gathering public perspectives on the return of results from genome sequencing research. [5] In 2015 Anna founded the Society and Ethics Research group, which is part of Wellcome Connecting Science. [6] Anna and the group are interested in a range of issues relating to genomics and its relationship with society. They are undertaking research on public attitudes to genomic data sharing; [7] how to communicate genomic concepts to patients; [8] and the duty of care and the duty of confidentiality in the context of medically relevant genetic information. [9] [10]

Anna acted as an advisor on genomics and ethics to the 2019 Topol Review, an independent report commissioned by the Secretary of State for Health and Social Care on preparing the NHS healthcare workforce for the digital future, including genomics, AI and robotics.

She was Chair of the Oversight Group for Genomics England's 2019 report on 'A Public Dialogue on Genomic Medicine'. [11]

Honours and awards

Middleton was the Chair of the Association of Genetic Nurses and Counsellors (2018-2019) and Vice-Chair prior to this, having first been elected to the Committee in 2014. She was also Vice-Chair of the Genetic Counselling Registration Board (2007-2009) and an elected member of the Board prior to this (2004-2010).

Media work

Anna has undertaken extensive print and broadcast media work, including appearance on Channel 4 news, BBC Radio 4, and in the Guardian. [12] [13] [14]

Related Research Articles

<span class="mw-page-title-main">Genetic counseling</span> Advising those affected by or at risk of genetic disorders

Genetic counseling is the process of investigating individuals and families affected by or at risk of genetic disorders to help them understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. This field is considered necessary for the implementation of genomic medicine. The process integrates:

<span class="mw-page-title-main">Wellcome Trust</span> British healthcare research charity established in 1936

The Wellcome Trust is a charitable foundation focused on health research based in London, United Kingdom. It was established in 1936 with legacies from the pharmaceutical magnate Henry Wellcome to fund research to improve human and animal health. The aim of the Trust is to "support science to solve the urgent health challenges facing everyone." It had a financial endowment of £29.1 billion in 2020, making it the fourth wealthiest charitable foundation in the world. In 2012, the Wellcome Trust was described by the Financial Times as the United Kingdom's largest provider of non-governmental funding for scientific research, and one of the largest providers in the world. According to their annual report, the Wellcome Trust spent GBP £1.1 billion on charitable activities across their 2019/2020 financial year. According to the OECD, the Wellcome Trust's financing for 2019 development increased by 22% to US$327 million.

<span class="mw-page-title-main">Wellcome Sanger Institute</span> British genomics research institute

The Wellcome Sanger Institute, previously known as The Sanger Centre and Wellcome Trust Sanger Institute, is a non-profit British genomics and genetics research institute, primarily funded by the Wellcome Trust.

<span class="mw-page-title-main">Bartha Knoppers</span> Canadian lawyer and scientist

Bartha Maria Knoppers, OC OQ is a Canadian law Professor and an expert on the ethical aspects of genetics, genomics and biotechnology.

The Nuffield Council on Bioethics is a UK-based independent charitable body, which examines and reports on bioethical issues raised by new advances in biological and medical research. Established in 1991, the Council is funded by the Nuffield Foundation, the Medical Research Council and the Wellcome Trust. The Council has been described by the media as a 'leading ethics watchdog', which 'never shrinks from the unthinkable'.

Generation Scotland is a biobank, a resource of biological samples and information on health and lifestyle from thousands of volunteer donors in Scotland.

The Centre of Genomics and Policy is affiliated with McGill University and the Genome Innovation Centre Canada. The Centre was launched to respond to the urgent need for informed public policy and analyses on socio-ethical issues related to human genetics research at the international, national, and provincial levels. Its website provides policy makers and the public access to policy statements concerning genetic research.

DECIPHER is a web-based resource and database of genomic variation data from analysis of patient DNA. It documents submicroscopic chromosome abnormalities and pathogenic sequence variants, from over 25000 patients and maps them to the human genome using Ensembl or UCSC Genome Browser. In addition it catalogues the clinical characteristics from each patient and maintains a database of microdeletion/duplication syndromes, together with links to relevant scientific reports and support groups.

<span class="mw-page-title-main">Wellcome Centre for Human Genetics</span> Research Institute at the University of Oxford

The Wellcome Centre for Human Genetics is a human genetics research centre of the Nuffield Department of Medicine in the Medical Sciences Division, University of Oxford, funded by the Wellcome Trust among others.

<span class="mw-page-title-main">Genomics England</span> UK government-owned company

Genomics England is a company set up and owned by the United Kingdom Department of Health and Social Care to run the 100,000 Genomes Project. The project aimed in 2014 to sequence 100,000 genomes from NHS patients with a rare disease and their families, and patients with cancer. An infectious disease strand is being led by Public Health England.

Dr. Rob Elles is a British molecular geneticist.

<span class="mw-page-title-main">Nicole Soranzo</span> Italian British geneticist

Nicole Soranzo is an Italian-British senior group leader in human genetics at the Wellcome Sanger Institute, Professor of Human Genetics at the University of Cambridge. She is an internationally recognised Human Geneticist who has focused on the application of cutting edge genomic technologies to study the spectrum of human genetic variation associated with cardio-metabolic and immune diseases. She has led many large-scale discovery efforts including more than 1,000 novel genetic variants associated with cardio-metabolic diseases and their risk factors as well as establishing the HaemGen consortium, which is a worldwide effort to discover genetic determinants of blood cell formation and also interpretation of the downstream consequences of sequence variation through a host of integrative analyses and functional approaches.

Náníbaaʼ Garrison (Diné) is a bioethicist, geneticist, and associate professor in the Institute for Society and Genetics and Department of Internal Medicine at the University of California, Los Angeles. She is a member of the Navajo Nation, and her career has focused on studies of health conditions prevalent in, and attitudes toward genetics research among, the Navajo community.

Bettina Meiser is a professor at the University of New South Wales, with expertise in the psychosocial aspects of genetics; cancer, hereditary cancer, and the impact of genetic counselling and testing.

Charmaine DM Royal is an American geneticist and Associate Professor at the Institute for Genome Sciences & Policy and the Department of African and African American Studies at Duke University. She studies the intersections of race, ethnicity, ancestry genetics, and health, especially as they pertain to historically marginalized and underrepresented groups in genetic and genomic research; and genomics and global health. Her major interest is in addressing root causes and implementing sustainable solutions regarding problems of race and racism in research, healthcare, and society. Royal is a Human Heredity and Health in Africa (H3Africa) Independent Expert Committee (IEC) member appointed by the National Institutes of Health (NIH) and is a 2020 Ida Cordelia Beam Distinguished Visiting Professor at the University of Iowa.

<span class="mw-page-title-main">Christine Patch</span> Nurse and genetic counsellor

Christine Patch is a nurse and genetic counsellor. She is a Principal Staff Scientist in Genomic Counselling in the Society and Ethics Research group, part of Wellcome Connecting Science, based on the Wellcome Genome Campus. She is also the Clinical Lead for Genetic Counselling at Genomics England, and a former President of the European Society of Human Genetics.

The Human Genetics Society of Australasia (HGSA) is a membership organization for individuals in the field of human genetics who primarily practise in the Oceania region. Members typically hold both a qualification in human genetics and work in the field. Membership is drawn from clinical, laboratory and academic specialties. Members include clinical geneticists; genetic counsellors; laboratory scientists ; and academics.

<span class="mw-page-title-main">Anna Gloyn</span> Endocrinologist and geneticist

Anna L Gloyn is a geneticist, who is Professor of Pediatrics (Endocrinology) and Genetics at Stanford University. She was the recipient of the Minkowski Prize in 2014 for her research into causal mechanisms of diabetes pathogenesis. Her work has contributed to improved treatment options for people with rare forms of diabetes and helped advance our understanding of type 2 diabetes.

<span class="mw-page-title-main">Wylie Burke</span> American geneticist

Wylie Burke is a Professor Emerita and former Chair of the Department of Bioethics and Humanities at the University of Washington and a founding co-director of the Northwest-Alaska Pharmacogenomics Research Network, which partners with underserved populations in the Pacific Northwest and Alaska.

References

  1. 1 2 "Anna Middleton Education".
  2. Middleton A, Hewison J, Mueller RF (1998) Attitudes of deaf adults toward genetic testing for hereditary deafness. Am J Hum Genet 63 (4):1175-80. doi : 10.1086/302060 PMID   9758618
  3. Society and Ethics Research group website
  4. "Genetic Counsellor Registration Board".
  5. Deciphering Developmental Disorders project website
  6. Wellcome Connecting Science website
  7. Your DNA Your Say
  8. Music of Life project
  9. Middleton A, Milne R, Robarts L, Roberts J, Patch C (2019) Should doctors have a legal duty to warn relatives of their genetic risks? Lancet 394 (10215):2133-2135. doi : 10.1016/S0140-6736(19)32941-1 PMID   31784025
  10. ABC vs St George's NHS Trust project
  11. "A major new dialogue has found the public are enthusiastic and optimistic about the potential for genomic medicine but have clear red lines on use of data | Genomics England". 24 April 2019.
  12. Channel 4 News
  13. BBC Radio 4 Inside Health
  14. "Can't figure out genetics? Here's a handy guide …". The Guardian . 2016-03-13. Archived from the original on 2023-06-08.