A recent survey analyzed the distribution of Genetic Counselors in the state of Wisconsin:*

Workforce supply and demand models suggest that there should be 1 fulltime equivalent (FTE) genetic counselor providing direct patient care (in clinics and hospitals) for every 75,000 individuals in the population.

The Census Bureau of Wisconsin reported a population of 5.8 million in 2018. This indicates a need for 77 FTE clinical genetic counselors in the state. However, there were only approximately 55 FTE offering clinical services, and some of these providers were split, also providing with non-direct patient care services. Based on the projected need, Wisconsin has less than 50% (37.18 FTE) of the needed genetic counselors to meet the clinical demand.*

The study ultimately found that the workforce shortage in WI results in long patient wait times and an inequitable distribution of services throughout the state, as well as increased stress in the profession and higher considerations to leave job or switch to non-clinical roles.

*Dawson, Carlee; et al. (2020). Does Supply Equal Demand? The Workforce of Direct Patient Care Genetic Counselors in Wisconsin. WMJ : official publication of the State Medical Society of Wisconsin. 119. 158-164.

Providing Licensure in WI for Genetic Counselors is one way in which more genetic counselors may be encouraged to join the state workforce.

Additionally, cities in Wisconsin have fewer genetic counselors compared to other metropolitan areas across the nation, with Milwaukee ranking third lowest in the top US Metropolitan Statistical Areas in which the majority of genetic counselors work in 2019.

National Society of Genetic Counselors. 2019 Professional status survey: the demographics and methodology report. Accessed September 11, 2018.

WHAT CAN LICENSURE ACHIEVE?

1. Improve access to quality genetic services

   1. Require genetic counselors to remain up-to-date on current practices in the field

   2. Draw more qualified genetic counselors to Wisconsin

   3. Encourage institutions to hire genetic counselors

   4. Allow for more patients to receive genetics services

2. Protect Wisconsin Residents

   1. Provide a means of reporting unethical behavior of a genetic counselor

   2. Ensure appropriate training and certification of those providing genetic counseling

   3. Protect patients from harm

   4. Decrease liability on healthcare systems/ non-genetics providers

3. Improve Healthcare Costs

   1. Ensure appropriate, cost-effective genetic testing is ordered

   2. Help payors save healthcare dollars

   3. Allow institutions to bill for genetic counseling services, generating revenue for the healthcare systems and the state

   4. Licensure would be budget-neutral for WI, as the cost of regulation will be offset by the fees collected for obtaining a license.

NOW MORE THAN EVER

The rise of direct-to-consumer genetic tests that are available online or at the local drug store, without the involvement of a healthcare provider, are becoming common place. These tests primarily provide information about common traits and ancestry, and in some cases, limited information about certain genetic health risks. However, these unregulated consumer-grade tests are not a substitute for clinical medical tests and should not be used to make healthcare decisions. 

Although the clinical validity of these tests, the inconsistency of results, and the lack of sufficient consent, Wisconsinites are making medical decisions based on their results. Even more dangerously, some companies offer consumer’s their raw genetic data, which can be uploaded to third-party tools for further interpretation. Third-party interpretations however, are based on outdated databanks and insufficient analysis. In fact, research shows that 40% of “clinically significant” findings identified by these interpretation tools are in fact false positives and can inaccurately be used to make drastic healthcare decisions if not further evaluated by a healthcare provider trained in genetics who can interpret this information. 

Increased availability and awareness of genetic testing has not only led to increased interest in learning about one’s own genetic risks, but has also led to a rise in scammers.  Scammers offered Medicare beneficiaries cheek swabs for genetic testing to obtain their Medicare information for identity theft or fraudulent billing purposes. This large-scale scam led to $2.1 Billion dollars being billed to the U.S. Medicare Program.

As such, improving access to licensed genetic counselors for medical-grade, appropriate testing for Wisconsin consumers is now more important than ever.  

• Grant funding from NSGC in 2019 was used to retain our attorney and legislative representative. 

• WICGA Social Policy Committee: Secured chief authorship for the bill and obtained a large bipartisan co-authorship list.

  SENATE committee meeting with Health and Human Services occurred on  January 29 2020.

• ASSEMBLY committee meeting with Regulatory Licensing Reform occurred on February 13 2020.

  We cannot say THANK YOU enough to the courageous WI GCs who traveled to Madison and testified as poised ambassadors of this bill and of our profession at both committee meetings!!!

  • There was no registered opposition to our bill at these committee meetings

  • American Nutrition Association and the American College of Medical Genetics and Genomics expressing concern and requesting amendments which was declined

• The Senate committee was scheduled to vote on our bill on February 26, but an anti-abortion bill amendment was requested the day before, and the vote was effectively stopped.

• March2020: Covid19 …

WIGCA Members can find a more detailed timeline here