Children have the right to privacy
Children have the right to privacy, and in the world of rare disease, privacy can relate to children’s health data. Data sharing in rare disease is very important to help understand, diagnose, and treat individual rare disorders, and to help improve quality of life.
Data sharing is central to medical care and research and can mean a greater chance of diagnosis for current and future children living with rare disease. There is potential, when the number of people with any one disease is low, that there may be a chance of loss of privacy when sharing data .
Data sharing that maintains privacy and informed consent will help achieve the possible benefits of data sharing. Australian genetic, undiagnosed and rare disease groups support the need for data standards and systems as outlined in the Call for a National Rare Diseases Framework.