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Confidentiality and Ethics

You are here: Home / Ask a Question / Your Questions Answered / Confidentiality and Ethics

What opportunities can the study of genomics offer us?
Why is genetic genomic data confidentiality important?
What’s the paradox with genetic testing?
How about confidentiality in the medical profession?
What major improvements to health care have been generated by genomics?
What are the arguments against current investment in genomics?
What is the counter argument?
What are the issues with screening eligibility?

You can click on the image above to take to view a video about how your data is protected and makes a difference at the same time.


What opportunities can the study of genomics offer us?
Genomics has wider potential uses with respect to proving identity. It also panders to our social desires to understand our ancestral roots and help predict future health problems. This could open up new types of sophisticated gaming opportunities based on life simulation modelling genomic profile is a unique identifier and can stratify risk, meaning there is a potential for it to be used by others to discriminate either socially or for financial gain. Results from the 100,000 Genomes Project do not need to be declared to insurance companies but follow-up investigations or a subsequent diagnosis may need to be. Genomic data will not affect existing policies. Health insurance rules may be different for individuals planning to emigrate to other countries.

Why is genetic genomic data confidentiality important?
Firstly, our genomic profile is, by large, not related to our behaviour and its interpretation at present is often imprecise – potentially unnecessarily labeling those at risk. Secondly, discrimination on genetic testing grounds would significantly impact on future genetic counseling, as fewer patients would attend for fear of being labeled. This would prevent patients undergoing testing and potentially benefiting medically.

What’s the paradox with genetic testing?
The desire to predict, better treat or eliminate disease through genomics while maintaining confidentiality has a paradox: as the study genomics becomes more prevalent, more information needs to be stored, analysed, shared and compared. The vast quantities of data are huge and difficult to interpret without technical expertise.

How about confidentiality in the medical profession?
In order for the results to be useful, they need to be presented and explained to patients by clinicians. Clinicians leading these discussions need to be mindful of other medical problems or symptoms of the patient and pitch the information according to the patient’s level of anxiety, cultural beliefs, health behaviour and educational background.

What major improvements to health care have been generated by genomics?
Metabolic/immunological advances such as the use of statins, tamoxifen, anti-D for rhesus disease of the newborn.

What are the arguments against current investment in genomics?
Economically, genetics and genomics have cost vast sums of money but have to date benefitted relatively few individuals beyond metabolic/immunological advances. The potential to eradicate cancer or rare diseases, which often affect younger families, is very tempting, however in other parts of the world access to sanitation, fresh water and malarial nets could save more lives for less investment.

What is the counter argument?
A 500-year-old method – using microscopes- is still fundamental to cancer and microbiology diagnostics and planning treatment! With antibiotic resistance on the rise, inaction in identifying genomic variation is likely to have a catastrophic impact on our success in treating infections in the future. Medical progress requires analyzing data from controlled studies. For example this led us to stop unsafe blood-letting which had been going on for 1700 years after we developed a greater understanding of blood groups and diseases like HIV. One in 17 individuals are affected with rare diseases and a coordinated approach between clinicians, patients, academics and commercial companies is now needed to make significant progress in improving health outcomes.

What are the issues with screening eligibility?
Screening uses economically important resources, yet eligibility is often calculated based on age rather than scientifically analysed risk. The use of improved stratification could help prevent disease more effectively whilst also saving more resources.

If your confidentially and ethics question has not been answered in this section, please visit our Ask page and submit your question there.

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Recent News

  • Are your NHS patients eligible for WGS? September 23, 2019
  • Update on 100,000 Genomes Project September 23, 2019
  • Creating genetic reports that can be understood by nonspecialists – help needed September 23, 2019
  • We celebrate as 100,000 genomes sequenced December 13, 2018
  • Government target to map 5 million genomes October 10, 2018

RSS Genetics News from the University of Cambridge

  • Q&A with Sharon Peacock, coronavirus variant hunter February 22, 2021
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    Initial results suggest that the screening programme, together with the University’s public health measures and responsible student behaviour, has helped limit the spread of the virus. Now, the team running the programme has joined up with researchers at the COVID-19 Genomics UK Consortium (COG-UK) to track how infections spread among the student population. They have shown how […]
  • Cambridge-led SARS-CoV-2 genomic surveillance consortium receives £12.2 million November 16, 2020
    The additional investment will enable COG-UK to grow and strengthen current genomic surveillance efforts spearheaded by the Wellcome Sanger Institute and the University of Cambridge, together with the four UK Public Health Agencies and other COG-UK partners, with the aim of increasing sequencing capacity across the national network and reducing turnaround time from patient sample […]

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