Genomics England Ethics: Nechama Tatz-Wieder

Background

Although my DPhil research was focussed on using bioinformatic and statistical approaches in genetics, I have had a long standing interest in the practical and psychosocial impact of genetic testing and disease on patients and their families. Throughout my DPhil, for my own interest I attended seminars and conferences on genetic ethics. I also reached out to genetic testing organisations and medical patient advocacy charities to lend my skills and learn from them. I found that having these other experiences really enriched and broadened my understanding of genetics - from technical analytical skills to understanding patients' lived experiences.

I am incredibly fortunate to have an outstanding supervisor who is extremely supportive and was encouraging of me developing breadth and pursuing my interests. When a large genetic ethics project tendered by Genomics England (GEL) in the Centre for Personalised Medicine here in Oxford was looking for students to contribute to the project, my supervisor connected me with the lead researcher and I joined the project. It was my first involvement in ethical research and I enjoyed participating and lending my more technical scientific knowledge to the project.   

Joining a national Ethics Advisory Committee

Due to this, a year or so later I applied for the Ethics Advisory Committee at GEL which was recruiting new members. They were looking for members with a range of different genetic and ethics experience and I was fortunate enough to be appointed to the committee. The purpose of the committee is to provide independent ethical advice and oversight to GEL and advise the GEL Board on current and emerging ethics issues. The time commitment is half a day a month, where we learn, contribute and discuss current and emerging ethics issues related to the activities of the organisation and the wider genomics ecosystem. It has been a wonderful opportunity to meet a range of different people and to be able to participate in these discussions. Even though I may be far less experienced than some of the other members of the panel, it is a level playing field and a really nice opportunity to contribute and be valued.

I highly recommend joining a board like this. The time commitment is minimal and the insight, knowledge and network gained cannot be understated. 

Cultivating opportunities

This position was not widely advertised but because of my prior work with the ethics team at GEL, I was following some of the relevant accounts on Twitter and saw the recruiting advert. With the encouragement of my supervisor and the Careers Service, I felt supported and guided throughout the application and interview process. I have found social media (Twitter and LinkedIn) highly valuable in pursuing my aligned genetic interests and expanding my network.

My two key messages are:

1) pursue your interests and create opportunities - these sorts of things will not be knocking on your door. You need to go find them.

2) Make use of the outstanding Careers Service here at Oxford. The importance of ensuring your applications and interview style are the best they can be cannot be overstated.

 Nechama Wieder is a final-year Clinical Medicine DPhil student at the Centre for Human Genetics and Big Data Institute at the University of Oxford. Her research focuses on the role of non-coding regions of the genome in rare diseases using large-scale multi-omics data. 

Nechama also has long-standing interests and efforts in patient advocacy, genetic testing and medical ethics, and serves as a scientific advisor to a medical advocacy charity.