Public awareness research
Understanding public awareness of genetic disorders and inherited risk.
Help Shared Blood understand how genetics, culture and family traditions shape health in Pakistan. Your answers are anonymous and will help improve public understanding of inherited disorders.
About you
Your age group, sex, highest level of education, and the province your family belongs to.
Cousin marriage
How many cousin marriages you know of in your social circle, whether you see them as an important tradition, and whether you have heard they can raise the risk of genetic disorders.
Awareness of genetic disorders
Which of beta thalassemia, cystic fibrosis, lysosomal storage disorders and Ehlers-Danlos syndrome you have heard of.
Premarital screening
Whether you are married and, if so, whether you had premarital screening for beta thalassemia.
Your views
Whether there should be a national genetic registry, whether discussing genetic disorders before marriage is taboo, whether Pakistan needs more awareness, and whether traditions should change when health risks are involved.
Shared Blood’s public survey explores how genetics, culture and family traditions shape health in Pakistan: what people know about inherited disorders, how they see cousin marriage and premarital screening, and what they think should change. Findings will be reported only in aggregate, from the people who chose to take part.
These findings describe the people who participated in the survey. They may show patterns within the survey sample, but should not automatically be read as representing all people in Pakistan or in any one province.
The survey is open now. Once responses have been collected, they will be cleaned, combined and reviewed before any results are published here. No draft or estimated statistics are shown in the meantime.
How the survey works
The survey is an online Google Form that people choose to fill in. Because respondents choose to take part, results will describe the people who answered, not a random sample of the population.
Privacy
The form does not ask for your name, contact details or date of birth. It asks for an age group and the province your family belongs to, and results will only be reported in aggregate.
Who can take part
Anyone can fill in the survey. It is currently available in English only, and it asks which age group you are in, starting from under 18.
Shared Blood’s survey findings describe the people who participated in the survey. The results may identify patterns within the survey sample but should not automatically be interpreted as representing all people in Pakistan or in any one province.
