# The Need for Machine-Processable Agreements in Health Data Management +
## 2 Real Health Use Cases and Requirements of Data Sharing  
In this work2 we focus on genetic health information, as experts have advised that the treatment of some of this data should be considered to be being owned by the family, not the individual [10]. Consider genetic diseases that have a known hereditary pattern, such as Huntington's, in which children have a 50% likelihood of inheriting the disease from a parent who has it. Current court decisions in the UK indicate that genetic risk of Huntington's can be considered familial, rather than confidential to an individual [10]. The actual diagnosis of the disease is still an individual's private data, but the risk and identified genetics can effectively be considered owned by the a family. In order to fully understand how patients and consultants understand and interact with genetic health information, we built myKinMatters (Figure 1). myKinMatters is designed to explore the decision making processes around the sharing of genetic test results. Users can construct family trees using a simple form-based interface. These trees can then form the basis of discussion with clinicians as to who in the family tree information should be shared with. myKinMatters allows users to share test result information via email with members on the family tree. The system allows the anonymous sharing of test results, providing an email handshake system enabling identity confirmation before sharing. Through co-design with clinicians and observations of patient usage, which are ongoing as part of an NHS-based user study, the following requirements were identified with respect to individuals' setting sharing-policies over their data:  
1. The ability for both patients and clinicians to express with whom data should be shared. When describing individuals to share data with, we can either define groups of users or allow patients to use complex classes and relationships, e.g., \"all of my mother's sisters\". The clinicians also use complex classes and relationships, but might use different terminology, e.g., \"maternal aunts\". 2. Record the process both patients and clinicians work through to determine what data should be shared with whom. In many of the observed interactions, the clinician must prompt the patient and suggest that the patient should share the data with a family member. This advice is not always taken, but the clinician's instigation is recorded. 3. Patients construct family trees in terms of genealogy, while clinicians express advice based on pedigree family trees; the system needs to be able to understand the relationship between these. 4. The system needs to understand what sharing has taken place so far as this may impact on future sharing decisions. 5. There will be generic information related to conditions that users might wish to include alongside shared test results, such as disease information or support information. 6. Patients have complex data sharing dependencies and wish to carefully manage the rate and spread of data, based on what other family members know, and when they know it. 7. With genetic data, some genetic information is owned by the family, while the diagnosis and disease progression is specific to a patient. Based on observations of patient interactions, we can see several core examples of genetic information sharing among patients, families and clinicians. These were simplified and translated into Use Cases in Table 1.  
UC1 highlights the very basic concerns that can be expressed in a family, and showcases how conflicts can arise. In this case, [PERSON] was diagnosed with an autosomal dominant genetic disease as an adult. In such a case, the clinician would recommend that all first degree relatives be informed and tested. [PERSON] wishes to share with all of her siblings, but her identical sister, also an owner of the data, does not wish their brother to know. Note, this is not necessarily a malicious statement, but can arise in complex family situations.