[Genetic counseling in Germany: development of demand]

Area of Science:

• Human Genetics
• Medical Law
• Healthcare Policy

Background:

• The German Act on Genetic Testing (GenDG) introduced regulations for human genetic services, including genetic counseling.
• Assessing the impact of GenDG requires analyzing genetic counseling utilization before and after its enactment.

Purpose of the Study:

• To evaluate the trends in human genetic counseling use in Germany before and after the GenDG.
• To understand the factors influencing the demand for genetic counseling and potential future developments.

Main Methods:

• Analysis of 13 years of human genetic counseling data (2005-2017) from statutory health insurance records.
• Utilized the GenBIn database to extract information on referral patterns, waiting times, and consultation reasons.

Main Results:

• Genetic counseling demand increased by approximately 6% annually since 2009, predating the GenDG.
• An increase in self-referrals and referrals from non-obstetric/gynecologic specialists was observed.
• Waiting times for genetic counseling increased between 2011 and 2017.

Conclusions:

• The rise in genetic counseling demand is multifactorial and began before the GenDG.
• The number of human genetics specialists has remained stable, while demand has grown, indicating potential capacity issues.
• Continued trends may lead to strained genetic counseling services and capacity limits.