The aim of this study was to assess whether genetic screening for genetic haemochromatosis (GH) is practicable and acceptable to screening participants and whether anxiety would be caused by screening populations unaware of their genetic status.

This study demonstrates that screening for genetic haemochromatosis neither attracts the worried well nor causes anxiety.

Executive Summary

Following an initial literature review, the study was conducted in two phases employing face to face interviews with people living with genetic haemochromatosis to share their lived experience on GH screening/testing and online surveys for data collection.

  • From the HADS (Hospital Anxiety and Depression Scale self-reporting scale) score, 67.36% of the respondents were not anxious about screening, 17.83% had mild anxiety and 14.81% had moderate probable anxiety due to screening.
  • When asked whether the screening process made them anxious, 70.8% of the respondents said no while 29.2% said yes.

Haemochromatosis is an ideal condition for implementation of population genetic screening since GH-induced ill-health is preventable. Both the public health and individuals stand to benefit from population screening.

About the Author

Maureen Ng’etich is MSc. Health Data Science student at the University of Swansea, United Kingdom with a background in Health Informatics. She is a recipient of the prestigious Chevening scholarship award.

From May to July 2022, she interned at Haemochromatosis UK as a Health Data Research intern, where she conducted this study.

Maureen previously worked as a Health Informatics Officer in Kenya where she engaged and supported the effective utilisation of Electronic Medical Records to enhance performance and provided statistical and analytical support to routine health reports.