Article authored and provided by TrakGene as part of a paid partnership with NSGC. The content, views and opinions expressed in this article are those of TrakGene, and do not necessarily reflect the opinions and views of the National Society of Genetic Counselors.

Family history has always been valuable in patient care. Today, it is more important than ever, thanks in large measure to the increasingly important role that genetics plays in medicine. Pharmacogenetics, for example, is a relatively new branch of pharmacology with a long history that has gained mainstream attention in just the last few years.

To know the family is to know the patient, a simple concept, yet its application in genetic counseling is often complicated.

Family history data is constantly changing, growing as families grow. The recent surge in demand for genetic counseling has triggered a tidal wave of data that needs to be collected, organized, and regularly updated. This is a challenging and time-consuming undertaking without automation technologies and analytics tools.

The patient-focused Family History Questionnaire (FHQ) is an innovative solution for aggregating and organizing family history data.

The FHQ can be completed in the comfort of the patient’s own home and with input from family members, which allows the patient to capture as much family history as possible. It provides an opportunity for patients to initiate health conversations with their relatives and facilitates information sharing, essential in helping the genetic counselor ensure rapid diagnosis and avoid duplicative work.

Lack of familial medical data sharing usually translates to wasted resources. New genetic investigations, for example, are often initiated for multiple family members, though a diagnosis already is known and documented in separate medical records. In the pharmacogenomics setting, without data sharing, doctors have administered medications shown to be ineffective for another family member, consequently prolonging treatment for their patient and increasing cost.

It's a common assumption that people want to be extremely private with their medical data. However, the opposite may be true in many cases.

Genetic counselors often find that people in families with known genetic conditions are very willing to share their medical history data if it is going to help loved ones. Sharing family history sometimes gives patients a greater sense of autonomy over their own medical record.

There are other concerns in medical data sharing, beyond the patient’s willingness to disclose their medical history, including its impact on a patient’s insurance eligibility. Insurers use factors like the medical history of the patient’s parents and siblings to determine their life insurance health classification and potentially assign higher premium fees.

There is limited scope for treating the family rather than the individual as the patient, but pedigree drawing tools make it more possible.

Most Electronic Medical Record (EMR) systems prohibit or do not have the capability to capture and store pedigrees that may be edited over time and shared between family members. Pedigree data is well hidden behind privacy barriers so that the data is available for care of the current patient only and not for family members.