166,000 people in UK population unaware they have Lynch syndrome

05 June 2019
Family history

In the week that saw the passing of Dr Henry Lynch, a scientist renowned for his work on hereditary cancer, NHS Wales will begin offering genetic testing for Lynch syndrome to all bowel cancer patients. We reflect on the significance of Dr Lynch’s work and how his legacy is continuing to save lives.

Prominent American cancer researcher, Dr Henry Lynch, has died this week aged 91. Known as the father of hereditary cancer detection and prevention, Dr Lynch’s work has saved thousands of lives worldwide by championing screening practices to help detect cancers earlier and taking preventative action. 

When Dr. Lynch began his career, most scientists rejected the idea that cancer could be hereditary. However, Dr. Lynch’s detailed studies of more than 3,000 families told a different story. Over almost six decades of his career he meticulously charted the spread of cancer through the branches of family trees and down through generations.

Dr. Lynch is credited with the discovery of hereditary non-polyposis colorectal cancer (HNPCC), which was later renamed Lynch syndrome. Lynch syndrome is an inherited condition that predisposes people to several different types of cancers, including ovarian cancer. You can learn more about it affects an individual’s risk here.

In 1971, he identified a hereditary form of breast and ovarian cancers, which in the 1990s was linked to mutations in the BRCA genes.

Dr Lynch promoted early detection techniques, such as frequent colonoscopies for patients with Lynch syndrome, as well as preventive mastectomies and oophorectomies (removal of the ovaries), for some patients with hereditary forms of breast and ovarian cancer.

Starting this month, Wales will become the first country in the UK to offer genetic testing for Lynch syndrome to all bowel cancer patients. 

Currently, only 5% of those with Lynch syndrome have been identified, meaning more than 166,000 people living in the UK don’t know they are at a higher risk of certain cancers.

If, following testing, the patient is identified as having this condition, they and their immediate family can be offered regular surveillance and guidance on risk reduction, meaning cancers can be diagnosed much earlier or even prevented from developing in the first place.

Knowledge is power and identifying families who are at high risk will undoubtedly save lives. At Ovarian Cancer Action we are delighted that Wales is able to lead the way by committing to this genetic screening test and hope that England, Scotland and Northern Ireland will soon follow their lead.


Are you concerned about how your family history might affect your risk of developing certain cancers? Use our Hereditary Cancer Risk Tool to assess your risk. It is suitable for both men and women and only takes a few minutes to complete.