Video Interview: Lindsay Middelton – National Cancer Institute, NIH, USA

This week we introduce Lindsay Middelton R.N., C.G.C, who is a genetic counsellor with the National Cancer Institute (NCI) of the National Institutes of Health, USA.

Lindsay is part of the Urologic Oncology Branch at the NCI, which treats patients affected with inherited and sporadic forms of genitourinary cancer, and performs clinical trials as well as basic research. Teams at the NCI, in collaboration with researchers worldwide, identified the genes for BHD (Nickerson et al., 2002), Von-Hippel Lindau disease (Latif et al., 1993), and hereditary papillary renal cell cancer (Schmidt et al., 1997); work at the NCI on BHD has been ongoing since the 1990s. The NCI is in fact currently sponsoring a study investigating the genetics of BHD, “Genetic Analysis of Birt Hogg-Dube Syndrome and Characterization of Predisposition to Kidney Cancer”, which is recruiting participants.

As a genetic counsellor, Lindsay meets with individuals diagnosed with a hereditary condition. Genetic counsellors are often a very significant source of resources and support to families, offering guidance on understanding genetics, advice on managing a genetic condition, and time to discuss concerns, such as informing family members about a positive diagnosis. More information on genetic counselling and links for finding a local counsellor are available here.

With over 15 years’ experience in BHD and having met hundreds of patients, Lindsay’s specialist experience and knowledge is invaluable. As a member of the NCI team dedicated to undertaking translational research in kidney cancer disorders, Lindsay has travelled the United States to undertake clinical research into BHD and is an author on a number of papers. Lindsay Middelton’s research interests also include analysing nursing developments in cancer genetics as well as inherited kidney disorders.

The BHD community has also been fortunate to benefit from Lindsay’s expertise at the BHD Symposium, where she has been graciously leading the Patient and Family sessions (see summaries from the Third BHD Symposium and the Fourth BHD Symposium).

For a closer insight into Lindsay’s work, have a look at her Video Interview. There is also an audio-only version available, as well as a written transcript. The following publications also give an overview of Lindsay Middelton’s research:


  • Middelton L, Dimond E, Calzone K, Davis J, & Jenkins J (2002). The role of the nurse in cancer genetics. Cancer nursing, 25 (3), 196-206 PMID: 12040228
  • Singer EA, Bratslavsky G, Middelton L, Srinivasan R, & Linehan WM (2011). Impact of genetics on the diagnosis and treatment of renal cancer. Current urology reports, 12 (1), 47-55 PMID: 21128028
  • Zbar B, Glenn G, Merino M, Middelton L, Peterson J, Toro J, Coleman J, Pinto P, Schmidt LS, Choyke P, & Linehan WM (2007). Familial renal carcinoma: clinical evaluation, clinical subtypes and risk of renal carcinoma development. The Journal of urology, 177 (2) PMID: 17222609