Profiles

Here, you can find any of the interviews on this site.



Julie and Mark

Mark and Julie's daughter, Jenny, has Dilated Cardiomyopathy. Mark, Julie and Jenny were asked to participate in the 100,000 Genomes Project as a family. They hope that the project will give them more knowledge about their daughter's condition, and help others in the future.

  • Background

    Julie and Mark are married. They have four daughters between the ages of 15 and 25, and are white British.

  • Age at interview 50
  • Jenny

    Jenny was diagnosed with Dilated Cardiomyopathy when she was 6 weeks old. She agreed to take part in the 100,000 Genomes Project because she hopes it will be able to tell her why she has her condition and whether it is genetic. Knowing this is important for her as she and her partner are hoping to have children in the future.

  • Background

    Jenny is a mature student, and lives with her partner. She is white British.

  • Age at interview 23
  • Sex/Gender Female
  • Stuart

    Stuart was diagnosed with Retinitis Pigmentosa, a degenerative eye condition, in 2001. He is very interested in medical research, as his two sons also have a genetic condition. He was happy to take part in the 100,000 Genomes Project because he trusts his consultant and hopes that the project will help to develop further knowledge and treatment options for his condition.

  • Background

    Stuart works as a project manager. He is married and has two sons who are aged 18 and 20. He is white British.

  • Age at interview 52
  • Sex/Gender Male
  • Emma

    Emma and her family became involved in the 100,000 Genomes Project because her son has a rare genetic condition which causes him to stop breathing when he falls asleep. She decided to take part in the project to help advance medical knowledge and hopes it might help others who are in a similar situation.

  • Background

    Emma works part-time as a nurse. She is married and has two children aged 3 and 6. She is white English.

  • Age at interview 40
  • Sex/Gender Female
  • Lucy Z

    Lucy Z took part in the 100,000 Genomes Project when she was diagnosed with endometrial cancer in January 2013. She thinks the project is an ambitious one which may be quite influential.

  • Background

    Lucy Z is a graphic designer. She lives with her partner and daughter who is 10 years old. She is white British.

  • Age at interview 53
  • Sex/Gender Female
  • Vicky

    Vicky took part in the 100,000 Genomes Project when she started treatment for breast cancer. She hopes that research can help find a cure for cancer.

  • Background

    Vicky is a retired retail assistant, and has been a widow for 22 years. She is white English.

  • Age at interview 74
  • Sex/Gender Female
  • Birgit

    Birgit took part in the 100,000 Genomes Project when she started treatment for breast cancer. She was keen to be involved as she is all for research and hopes that this can help improve health outcomes.

  • Background

    Birgit is married with two children aged 9 and 12. She works part-time as a social worker. She is white German.

  • Age at interview 41
  • Sex/Gender Female
  • Pam

    Pam was approached to take part in the 100,000 Genomes Project when she was waiting for breast cancer surgery. She hopes by donating her sample, researchers will be able to better understand hereditary diseases.

  • Background

    Pam is retired, but previously worked as a secretary. She has two daughters, seven grandchildren and three great grandchildren. She is White British.

  • Age at interview 84
  • Pauline

    Pauline was diagnosed with cancer of the ovaries/endometrial lining in 2016. She was asked to take part in the 100,000 Genomes Project when she was receiving treatment. She is keen to be involved in something that can help and is happy for her genomic information to be used.

  • Background

    Pauline has two adult sons. She is retired but previously worked in a bar. She is white English.

  • Age at interview 84
  • Sex/Gender Female
  • Barbara

    Barbara agreed to take part in the 100,000 Genomes Project after she was diagnosed with a particular type of womb cancer. She hopes that taking part will help improve understanding of the various causes of diseases such as cancer.

  • Background

    Barbara is married with adult three daughters. She previously worked as a manager but is now retired. She is white British.

  • Age at interview 65
  • Sex/Gender Female