HB 293-GENETIC COUNS: LICENSING; ADVISORY CNCL.  3:17:28 PM CO-CHAIR HALL announced that the only order of business would be HOUSE BILL NO. 293, "An Act relating to the practice of genetic counseling; relating to the licensure of genetic counselors; establishing the Genetic Counseling Advisory Council; relating to the duties of the State Medical Board; relating to telehealth by licensed genetic counselors; relating to medical malpractice liability of licensed genetic counselors; relating to immunity from civil liability for a licensed genetic counselor providing free health care services; and prohibiting unfair discrimination under group health insurance against genetic counselors." 3:18:03 PM CO-CHAIR ZACK FIELDS, as prime sponsor, presented HB 293. He explained that the bill covers the same topic that was discussed in a previous committee hearing: licensing for genetic counselors. He said that the proposed legislation is simple; it would establish licensing for genetic counselors to make a more sustainable billing model. He noted that genetic counselors work as part of a healthcare team and, as previous testimony had suggested, currently only the largest healthcare employers can hire genetic counselors due to the need to pay them with overhead. He noted that genetic counselors can improve both the quality and efficiency of healthcare and rapidly advancing medical technology would continue to assist with these practices. He said that these services should be utilized to provide faster and more cost-effective care for Alaskans. 3:19:27 PM EVAN ANDERSON, Staff, Representative Zack Fields, Alaska State Legislature, on behalf of prime sponsor, Representative Fields, offered the sectional analysis to HB 293 [included in the committee file], which read as follows [original punctuation provided]: Section 1: Amends AS 08.02.110(a) to add genetic counselors to a list of health care professions licensed by the Department of Commerce, Community, and Economic Development. Section 2: Amends AS 08.08.130(j)(1) to add genetic counselors to a list of health care providers who are authorized to provide services via telehealth. Section 3: Amends AS 08.08.130(j)(4) to add genetic counselors to a list of providers authorized to provide services via telehealth as part of a multi- disciplinary care team. Section 2: Amends AS 08 with a new chapter: Chapter 53: Genetic Counselors Article 1: Licensing of Genetic Counselors  Sec. 08.53.100 requires a license to practice genetic counseling in the state Sec. 08.53.110 lists the qualifications for licensure as a genetic counselor, which include the applicant completing a certification program and passing an examination. The bill also requires a review of the applicant's licenses previously held in other states, and of any disciplinary action taken in another state. Genetic counselors who may not meet these qualifications but who are able to verify that they have practiced in the field for a minimum of 10 years are also able to qualify for licensure. Sec. 08.53.120 provides for temporary licensure for up to one year for an otherwise qualified applicant who has not yet received their exam results. Temporary licensees must work under the supervision of a licensed genetic counselor or a licensed physician. Sec. 08.53.130 provides for licensure of a genetic counselor who is licensed in another state. Sec. 08.53.140 allow genetic counseling interns to practice under the direct supervision of a licensed genetic counselor  Article 2: Regulation of Genetic Counselors  Sec. 08.53.160 permits licensed genetic counselors to operate within their scope of practice, and defines the scope of practice to include ordering and interpreting genetic tests and counseling patients. Sec. 08.53.170 gives the Medical Board the authority to revoke or suspend the license of a genetic counselor or to discipline the licensee for any fraudulent, unprofessional, unethical, or criminal activities.  Article 3: Genetic Counseling Advisory Council  Sec. 08.53.180 establishes a genetic counseling advisory council under the purview of the State Medical Board. The council consists of 3-5 members, majority of whom are licensed genetic counselors, with at least one licensed physician. Article 4: General Provisions Sec. 08.53.200 affirms that the Administrative Procedures Act (AS 44.62) applies to any action taken by the board Sec. 08.53.210 provides exceptions for licensure for genetic counselors who are in the military service or employed by another agency of the federal government, and it requires that those providers hold patients to the same standard of care as other licensed providers. Sec. 08.53.220 makes violations of this chapter a class B misdemeanor. Sec. 08.53.230 allows the State Medical Board, in consultation with the genetic counseling advisory council to adopt regulations to carry out licensure and regulation of services. These regulations must include adoption of a code of ethics. The board also has the power to administer oaths, subpoena witnesses, and compel the production of documents. Sec. 08.53.300 provides definitions for "board" and "licensed genetic counselor. Section 5: Amends AS 08.64.101(a) giving the State Medical Board the authority to impose disciplinary sanctions on violations of the provisions of licensing genetic counselors under AS 08.53. Section 6: Amends AS 08.54.103(a) clarifying the authority of the board to conduct investigations into violations under AS 08.53 and to review the qualifications for licensure or renewal in consultation with the genetic counseling advisory council. Section 7: Amends AS 08.64.130(a) with a conforming change. Section 8: Amends AS 09.55.560(2) adding genetic counselors to the list of healthcare providers who may be the subject of medical malpractice liability. Section 9: Amends AS 09.65.300(c)(1) adding genetic counselors to the list of healthcare providers who receive liability immunity during the provision of health care services for free. Section 10: Amends AS 21.36.090(d) adding genetic counselors to the list of healthcare providers who may not practice or permit unfair discrimination based on the type of health insurance coverage they have. Section 11: Amends uncodified law with a new section allowing for transition regulations permitting certified genetic counselors to continue practicing until July 1, 2027. Section 12: Amends uncodified law with a new section allowing the State Medical Board to appoint the initial members of the genetic counseling advisory council. 3:24:33 PM CO-CHAIR HALL transitioned to invited testimony on HB 293. 3:24:59 PM The committee took an at-ease from 3:25 p.m. to 3:26 p.m. 3:26:02 PM ANNA JOHANNSEN, Certified Genetic Counselor, Southcentral Foundation, gave invited testimony in support of HB 293. She said that as the newest genetic counselor in Alaska, she would attempt to speak about the existing gaps in care and the future of the genetics workforce in the state. She said that as Monty Worthington had alluded to in a previous committee hearing, one of the primary benefits to licensure is reducing potential patient harm. She said that while in Alaska, she has seen well- intentioned medical providers give incorrect genetic information because genetics is complex and outside the scope of many clinicians' primary training. She noted that one patient with a strong paternal history of breast cancer was incorrectly told that breast cancer risk could not be inherited from her father. In another case, a family was told that having sons with autism suggested that another would be affected by autism; this was not supported by genetics. She said that these types of mistakes can lead to either inappropriate reassurance or unnecessary fear, which can lead to missed opportunities for appropriate care. She said that licensure helps ensure that patients receive guidance from professionals with verified training in genetics. MS. JOHANNSEN remarked that a second reason that licensure would be important is it would increase access to genetic counseling across Alaska. She said that the current lack of licensing makes it difficult for clinics to bill for genetic counseling services, which renders hiring genetic counselors challenging. She said that when she joined Southcentral Foundation, it increased the clinic's medical capacity and helped reduce wait times for patients who had been waiting months or even years for evaluation. This was only Alaska Native and American Indian pediatric patients. She said that other children and adults not in this group generally do not have access to services in the state and either travel out of state, rely on telehealth services, or receive care from providers with limited experience in genetics. MS. JOHANNSEN said that from a workforce perspective, licensure is critical for recruitment and retention. She said that after graduate school in genetic counseling, she found it difficult to find available positions in Alaska, or clinics that were willing to create one, and billing challenges were a part of this. She said that it took over a year to find a position in Alaska, and she nearly accepted an out-of-state position during the waiting period. She said that this experience highlights that future Alaskans would likely experience this same challenge. MS. JOHANNSEN discussed the economic and systems level impact of the bill. She said that she had previous work with the Alaska Native Tribal Health Consortium involving Medicaid authorization and medical travel. This experience gave her insights into how costly and inefficient in care out-of-state referrals can be, especially for rural patients. She remarked that licensure along with the billing and funding considerations could support the hiring of genetic counselors in additional communities and lower the wait times and overall cost for service access. MS. JOHANNSEN explained that when genetic testing is ordered incorrectly, insurance often does not cover costs for the correct test. This causes patients to pay out of pocket or go without care. She said even in a cost-free setting such as Indian Health Service (IHS) affiliated clinics, dollars are still diverted from other areas of care. She said that genetic counselors are specifically trained to avoid these errors, which saves both patients and healthcare systems time and money. MS. JOHANNSEN concluded by explaining that HB 293 would establish clear standards, accountability, and recognition for genetic counselors in Alaska. It would align the state with most other states and support safer care, improved access, and a stronger healthcare workforce in the state. 3:31:21 PM APRIL O'CONNOR, Genetic Counselor, Providence Cancer Center, answered questions during the hearing on HB 293. She noted that she graduated in 2005 and has been working in multiple states across the country and currently is affiliated with the Providence Cancer Center. She noted that she did not wish to give a formal testimony but was available to answer any questions. 3:32:30 PM REPRESENTATIVE SADDLER noted that previous discussions of genetic counseling had highlighted a national qualification or test for licensing. He asked Ms. Johannsen whether she could discuss what type of licensing she currently had. MS. JOHANNSEN responded that there is a national board that manages national board certifications, which is a certification that she currently holds. She said that licensure operates on a state-to-state level, whereas board certification operates at a federal level. She remarked that licensing was important since there is currently nothing in place regarding repercussions to malpractice and operating under the guise of a genetic counselor. REPRESENTATIVE SADDLER asked whether Ms. Johannsen knew what the national certifying board is called. MS. JOHANNSEN responded that the national accreditation board is called the American Board of Medical Genetics and Genomics. 3:34:17 PM MS. O'CONNOR, in response to a question from Representative Coulombe regarding prenatal genetics, responded that she has been a prenatal genetic counselor for the duration of her career. She said that in prenatal genetic counseling, there is a discussion of concerns regarding family history and potentially inheritable conditions. She said that genetic considerations are made when evaluating safe pregnancies and delivery. She explained that pre-pregnancy genetic counseling can also occur to assess any potential inheritable conditions. REPRESENTATIVE COULOMBE asked whether there was any counseling involved that could include ending a pregnancy if genetic deformities were detected. MS. O'CONNOR responded that her counseling did involve discussions about ending a pregnancy if there were concerns. She said that this is something that does not often come up in genetic counseling. She said however, sometimes there are questions regarding maternal health. She explained that at this point, mothers would receive consultation with their maternal fetal medicine specialist. REPRESENTATIVE COULOMBE inquired whether, if there was a prognosis that didn't implicate the health of a mother, but deformities were detected and the parents wanted to end the pregnancy, genetic counselors would provide consultation or would the patient be referred to a primary care provider. MS. O'CONNOR said that they would be referred to the maternal fetal health specialist. She said these would be the same people who refer patients to them for genetic consultation. 3:38:08 PM REPRESENTATIVE D. NELSON asked Co-Chair Fields how many people in Alaska currently have board certification for genetic counseling. CO-CHAIR FIELDS responded that this may be a question for testifiers and whether they all held board certification. 3:38:35 PM MS. JOHANNSEN responded that there are currently eight genetic counselors working in Alaska and all are currently board certified. REPRESENTATIVE D. NELSON said that given that there are so few genetic counselors in the state, perhaps it would be more practical to designate a seat on an existing board for someone with genetic counseling experience rather than create an entirely new council. He said that the current board proposal seems as if it would generate an unnecessary fiscal note. 3:39:37 PM CO-CHAIR FIELDS said that he did not have a preference for board structure but was more interested in getting a more sustainable billing model. 3:40:06 PM REPRESENTATIVE CARRICK said that she had the same line of inquiry and asked Sylvan Robb whether Alaska had any licensed professions in the state that do not have a board that regulates them, but the department simply issues licenses and deals with complaints. 3:40:41 PM SYLVAN ROBB, Director, Division of Corporations, Business and Professional Licensing, Department of Commerce, Community & Economic Development, responded that there are currently 24 programs that are regulated by the division that do not have board oversight. REPRESENTATIVE CARRICK asked whether Ms. Robb thought that, given its small size, the division could take on oversight of genetic counselors. MS. ROBB responded that this would be a decision for the sponsor. She said that 11 of the 24 mentioned programs have fewer than 100 license holders. 3:41:48 PM REPRESENTATIVE SADDLER raised concerns about a board that regulates a practice, when everybody in that practice is a member of the board. He compared it to a "fox guarding the hen house." He said that this creates conflict and challenges. He asked how many genetic counselors are practicing in the country. MS. O'CONNOR noted that nationwide, thirty-five states currently have genetic counseling licensures, and recent data indicates that 7,514 genetic counselors were board certified, 3,287 of which hold licensure in one of the 35 states that have licensing requirements. She noted that this data was from mid-2025. MS. O'CONNOR added that Alaska has eight board certified genetic counselors, seven who practice in the state. She clarified that anyone providing genetic counseling in a state the requires licensure would need licensure for that state, even if the service was provided via telemedicine. She noted that a single laboratory with sixty genetic counselors would need sixty licenses for operating in the state. MS. O'CONNOR mentioned that Idaho has few genetic counselors operating in the state as well, and the advisory board allows genetic counselors from outside the state to serve on the board. She said that Alaska could take a similar approach. In response to a follow-up question, she clarified that a genetic counselor's licensing can be designated in multiple ways, but the most common is licensed certified genetic counselor (LCGC). She confirmed that everyone who practices genetic counseling must be licensed. She talked about out-of-state advisory board members and recapped that they would still need licensing in that state. 3:45:23 PM MS. O'CONNOR clarified that genetic testing laboratories employee genetic counselors, and one example is Ambry Genetics in California. If they wanted to provide lab work for Alaska patients, they would need licensure to operate in Alaska. She noted that licensing would reach further than just counselors currently residing in Alaska. She clarified that when referring to a board, she means a board of genetic counselors, which is tied into board certification. 3:47:49 PM CO-CHAIR FIELDS said that in terms of options and cost, looking at page 9, lines 20-21 and subsection (g), the committee could certainly remove per diem and travel expenses to reduce expenses. He noted that his staff, Mr. Anderson, could discuss more about the current bill proposal versus talking about other policy options. 3:48:27 PM MR. ANDERSON noted to the committee that Ms. O'Connor is offering an alternative means of structuring the five-member advisory council. He said that the inclusion of out-of-state personnel to the board would require an amendment to the current bill proposition. Currently, the advisory board would be open only to residents of Alaska. In response to Representative Saddler, he clarified that the current bill proposal would have an advisory council structure of three genetic counsellors: one public seat and one physician. 3:49:34 PM REPRESENTATIVE D. NELSON asked whether the bill sponsor would be open to having an amendment that would propose alternative routes to the advisory council, whether this was simply online only meetings or even adding a board member with genetic counseling experience to the Alaska State Medical Association (ASMA). That way an entirely new advisory board could avoid being developed from the proposed bill. CO-CHAIR FIELDS recommended listening to the genetic counselors regarding the strengths and weaknesses regarding the different ways to structure the legislation. He said that he does not have a preference in terms of whether there would be a board or not, or whether it would meet remotely or not. He asked the genetic counselors to come back with strengths and weaknesses of each model, and he was supportive of how the committee wished to address them. REPRESENTATIVE D. NELSON directed a question to Ms. Johannsen or Ms. O'Connor and asked whether they think that the State Medical Board should have a chair or member with a history of genetic counseling or whether they thought a whole separate board should be established. 3:51:06 PM MS. O'CONNOR said that given her experience working in other states, it is customary to have an advisory board focused on genetic counseling. A board much like the one structured in the current bill proposition. She allowed that this is not the only way that this could be addressed. She raised concerns that relying on a single representative on the medical board, rather than having an advisory committee, could be an issue, particularly when reviewing out-of-state counseling credentials. She said that multiple people should examine other states rules and requirements to ensure that they match Alaska's standards before granting a license based on those credentials. She said that this type of evaluation should have more than one person's judgement. 3:52:54 PM REPRESENTATIVE COULOMBE asked the bill sponsor whether ASMA supports the bill. CO-CHAIR FIELDS responded that there has been no formal statement from ASMA. However, he was certain that they were aware of the bill proposal. REPRESENTATIVE COULOMBE noted that there would be a doctor on the advisory council and the medical board would also sit for the first genetic counseling board meeting. She said the structure seems unusual. CO-CHAIR FIELDS responded that in terms of how genetic counselors and doctors interact, it would be good to hear from an additional testifier. 3:54:15 PM MS. O'CONNOR explained that genetic counselors who work in states like Alaska where national board certification exists, but no licensure is in place, usually work as part of a care team under a physician's guidance. A physician usually refers a patient to a genetic counselor, and the counselor meets with the patient and provides information. The genetic counselor then sends recommendations back to the physician for follow-up care. The physician at this point would ultimately direct care. She remarked that genetic counselors are part of a team. MS. O'CONNOR said that in states that have licensure in place, a genetic counselor can manage care independently. They would not need a physician referral, and patients can self-refer or be referred directly. She said that because of this, genetic counselors work with physicians everywhere, but the connection is closer in states without licensure. She said that the ASMA was aware of the bill and the physicians she works with at Providence Cancer Center were aware of and supportive the bill. REPRESENTATIVE COULOMBE noted that part of the reason she asks is because often with ASMA there is a "turf war" on these types of things. She said this has happened with naturopaths, chiropractors, and pharmacists. She was trying to determine why they seem to be supporting the proposed legislation and said she understood that a doctor would testify later. CO-CHAIR FIELDS said that he was happy to follow-up with ASMA to determine to what extent it has discussed the proposed legislation. He suspected that there has not been a "turf war" since genetic counselors usually work as part of a multi- disciplinary team. He opined that it is a question of ensuring that doctors have the best information to make informed clinical decisions. REPRESENTATIVE COULOMBE said that it sounds a bit like a licensure compact and asked for elaboration on licensing and who can practice in the state. 3:56:55 PM MR. ANDERSON said that what she is referring to is that there are three or four ways in which someone can receive their license. He said that licensing information can be found on page 3, line 28 of the proposed bill, referring to AS 08.53.110, qualifications for license. He noted that the first possibility of licensure is to follow all the steps. This would mean they are board certified, have taken the exam, and receive a review. He said that this is the standard path to licensure. He noted that the proposed bill also has two other pathways towards licensure. The second could be found on page 5, line 19, section 08.53.120, temporary license. REPRESENTATIVE COULOMBE noted that she was referring to the verbiage on the top of page 6 of the proposed bill and believed that she understood the temporary license dynamics. MR. ANDERSON clarified that on page 6, line 4, referring to AS 08.53.140 of the bill, there is language that states that these individuals would follow the same licensing process, but license applicants would need to show licensure to the state. His understanding of the bill is that it is not a compact but provides a couple different pathways to licensure. 3:59:04 PM REPRESENTATIVE SADDLER said that his understanding when digging into the bill is that the Genetic Counseling Advisory Council is essentially a creation of the State Medical Board and would write regulations on behalf of the genetic counsellors. He noted the use of the words "consultation with" and "together with" in the proposed bill language. He asked whether this was a correct understanding of the power structure. MR. ANDERSON responded that this is a correct understanding and the question about the number of meeting dates came up earlier, but he thought there was a requirement for an annual meeting, with the ability to schedule more frequent meetings if needed. 4:00:01 PM REPRESENTATIVE SADDLER said that looking at the proposed bill, page 10, line 25, subsection (b), the language states that the board would have subpoena power. He asked whether the medical board had this power and asked why it would be necessary to restate it in this part of the bill. MR. ANDERSON said that he would assume that they may have this power, but this language gives that authority specifically to the advisory council. REPRESENTATIVE SADDLER said that the language he reads gives the authority to the board, not the advisory council. He said that it is important to have a representative from the medical board and medical association to get their perspective. 4:01:09 PM CO-CHAIR FIELDS noted that this is a great idea and he was happy to follow up. 4:01:22 PM REPRESENTATIVE COULOMBE said that she was reviewing the national code of ethics and the last code in section IV gave her pause. It read that genetic counselors must "adhere to applicable laws and regulations." However, when such laws are in conflict with the principles of the profession, genetic counselors work toward change that will benefit the public interest. She asked whether one of the testifiers could describe the intent of this language. 4:02:21 PM MS. O'CONNOR responded that the field of genetic counseling has traditionally been centered in large institutions contained in major cities, largely because many communities cannot afford to include genetic counselors as part of their care teams. As a result, the population receiving services have tended to come from specific demographic groups which has left many across the country underserved. She explained that this has created gaps in genetic data. She noted that people of European decent have well documented genetic variance and disease patterns, whereas many other populations including Alaska Natives remain underrepresented in genetic data and access to counseling services. She said that this impacts the accuracy and applicability of commonly used genetic tests. Therefore, genetic counselors must adjust their testing choices and methodologies when working with populations for whom standard tests are not reliable and recognizing when typical panels are insufficient. This means modifying their practice to meet the specific needs of the patient, rather than relying on standard approaches. REPRESENTATIVE COULOMBE expressed concern with the section regarding "laws in conflict with the principles of the profession" and asked for further elaboration. MS. O'CONNOR clarified that the reference to "law" is not about an actual statute but more similar in spirit to the Hippocratic Oath, which requires clinicians to do no harm and act in the best interests of their patients. She said that in practice, this means that if there is a barrier to providing appropriate care, clinicians are expected to navigate around that barrier when necessary to ensure the patient receives correct care. She offered her understanding that there is no specific federal or state law that mandates this. She noted that after living in 10 states and practicing genetic counseling across the country, one has not been encountered. She concluded by noting that the intent of this language was about ethical obligation to do what is best for a patient. 4:05:40 PM MS. JOHANNSEN added that the language was not implying to break any laws but addresses when a patient's care goes against arbitrary laws that a state may have. She said at this point, there is a duty to advocate for legal changes in the best interest of patients. REPRESENTATIVE COULOMBE said that she was pointing out that the code of ethics does not just refer to "law" but also says that genetic counselors are required to work toward change that benefits public interest. She said that the wording seems very specific and it could overlap with abortion-related controversies. CO-CHAIR FIELDS said that he would like to follow-up with Legislative Legal Services and ask about the bill language. REPRESENTATIVE COULOMBE noted that Legislative Legal Services did not write this language, but it was part of a national code of ethics that pertains to genetic counselors. 4:07:42 PM REPRESENTATIVE SADDLER mentioned page 6, line 26, subsection (g) of the proposed legislation, regarding genetic counseling interns. He said that he has heard from testimony that genetic counseling is a complicated practice. It needs to be practiced by licensed and certified counselors. He said that the bill would allow interns to work as genetic counselor interns with supervision. He asked who would hire an intern to provide genetic counseling services and where such a person would fit in the chain of medical practice. MS. O'CONNOR responded that at Providence Alaska Medical Center and Providence Cancer Center, there are genetic counseling students who make rotations during the spring, fall, or winter semesters. She noted that often they work with certified genetic counselors and see patients to better help foster their education and prepare them for graduation and transition into a career as a genetic counselor. MS. O'CONNOR noted that at Providence Alaska Medical Center they are referred to as interns and are individuals enrolled in a master's level program. She said that they have not passed to boards and hold certification and are classified as interns. 4:09:32 PM MS. JOHANNSEN added that intern was not necessarily an internship but a clinical rotation for graduate level students preparing for a career in genetic counseling. This way students can enter the career field without only "textbook knowledge." 4:09:51 PM REPRESENTATIVE SADDLER noted that the proposed bill states that a person may perform genetic counseling services using the title of genetic counseling intern. He said that it is still not quite clear what services would be provided. He said that it appears to be a thorough bill and he suspects that those advocating for genetic counseling helped draft it. He reiterated that he did not know what services interns would provide. He asked whether this meant that interns could bill services or were simply operating as auxiliaries to other genetic counselors. MS. O'CONNOR responded that this could be one of two things. For one, she said that they can see patients but always with a board-certified genetic counselor. The counselor would be observing and working with the intern. She said that second, board certified genetic counselors do the full counseling and the interns watch them. She said that this often depends on whether the intern is a first- or second-year student in a genetic counseling program. She said that if they are a second- year student and near graduation, they are required to have a certain number of cases of counseling experience while under direct supervision. She noted that the clinical experience determines eligibility to take the board. She said that they cannot bill for the services of any genetic counselor that is not board certified. REPRESENTATIVE SADDLER, regarding billing, asked if there was a place in the proposed bill that would allow genetic counselors to bill Medicaid for services. CO-CHAIR FIELDS responded that this may be a question for the testifiers as to why licensure enables billing. 4:12:41 PM MS. O'CONNOR explained that licensure enables billing for a licensed healthcare provider. She said billing codes would operate similarly to the way that many other clinicians bill insurance. She noted that if someone is not licensed, they are seen as "incident to" billing, where they are "incident to" the physician's time. She said that many times there are higher costs than what can be recouped. MS. O'CONNOR said that genetic counselors could not bill Medicare, as it does not recognize genetic counselors as professionals who should be reimbursed. She said that a recent bill in the U.S. House and Senate was drafted to address this, but it did not pass. She noted that it is currently being reintroduced by the National Society of Genetic Counselors to get genetic counselors accredited with Centers for Medicare & Medicaid Services (CMS) and allow Medicare billing. She noted that even genetic counselors in states with licensure in place could not bill Medicare. In response to a request from Representative Saddler for clarification, she confirmed that licensure would allow Medicaid billing, but the state would have to modify its CMS plan to do so. 4:15:23 PM REPRESENTATIVE COULOMBE drew attention to page 9, line 22, regarding general provisions, which include a list of exceptions to the application. She said that some of these exemptions include the military, the federal government, and Indian Health Services. She asked for clarification regarding the exemptions. MR. ANDERSON clarified that if the proposed legislation passed, these exemptions would be in place. 4:16:13 PM REPRESENTATIVE SADDLER drew attention to page 13, line 25 of the proposed legislation regarding the transition for current genetic counselors. He asked for clarification as to how current genetic counselors would be impacted while the licensing would be established. CO-CHAIR FIELDS responded that the effective date was July 1, 2027, and the bill section of reference was to enable current genetic counselors to continue practice while licensure goes into place. REPRESENTATIVE SADDLER asked whether there was a database of genetic information that exists and whether cheek swabbing was a method to collect genetic information. Furthermore, whether a family member would have to give permission to allow their genetic material to be sampled and stored in a database. He asked for clarification of the process. 4:17:52 PM MS. O'CONNOR responded that genetic information is typically provided from a testing laboratory. She noted that these labs typically have information on various genetic variants that impact disease function. She noted that these laboratories all have their own variant classification teams that include Medical Doctors (MDs), People holding a Doctor of Philosophy (PhDs), and genetic counselors. She said that genetic counselors and laboratories both have access to certain national databases. She noted that ClinVar was one such database and it is managed by the National Institute of Health (NIH). She said that using ClinVar, one can input a genetic variant and see what current research is available. She noted that most pathogenic variants that would be disease causing are known today from years of genetic testing. She said that occasionally they come across things that they were not certain of that require additional work and research. MS. O'CONNOR noted that in terms of patients giving permission, most labs in the U.S. release de-identified data to the central national databases. It is only information about the variant and disease state, and nothing is traceable to a patient through this kind of data. She said that patients that sign consent forms and undergo testing, consent to being tested at a laboratory that shares genetic information nationally to further genetic testing and genetic practice. In response to Representative Saddler, she explained DNA sequence. REPRESENTATIVE SADDLER said that Ms. O'Connor had mentioned that genetic information was shared with laboratories and asked whether they simply processed data and gave it back or provide a diagnosis and recommendations as well. He asked whether the labs were neutral and reflected the facts or came with suggestions. MS. O'CONNOR responded that they are effectively neutral in the sense that the report back just says where the variant is, what gene it is in, and then, based on published research, what studies and clinical case reports were available. She said that PubMed is a repository in the United States with affiliation with the National Institute of Health that allows for access to information on what genes cause issues, such as sickle cell anemia. She said that the laboratories team, after a variant is identified, will look up what genetic conditions are associated with the gene. 4:23:44 PM REPRESENTATIVE COULOMBE asked whether insurance companies were able to see genetic testing results and whether they were connected to the testing process. MS. O'CONNOR responded that this has been an ever-changing landscape, but essentially the law that protects against medical health insurance discrimination was the Genetic Information Nondiscrimination Act (GINA). She said this is a federal law that was passed in 2000 and states have adopted their own versions following its passing. MS. O'CONNOR noted that prior to the passage of GINA, many people chose to do genetic counseling as self-pay and kept the results out of the medical record because insurance companies were asking about the results and labeled people as having a pre-existing condition. She said that insurance companies were not dropping coverage but charging higher rates depending on test results. She said that this is unfair because most variants do not guarantee that someone will develop a condition but simply have an increased risk. This was why the federal government and states stepped in. MS. O'CONNOR said that there are protections with GINA, but they are not universal. She noted that full-time, active-duty military personnel covered under TRICARE were not covered under GINA. She said that individuals who work for businesses that employ 15 or fewer employees, were not covered by GINA. She explained that during her career as a genetic counselor, she has not seen any concerns outside of active-duty military settings. MS. O'CONNOR explained that there are no laws on the book that protect patients from genetic discrimination related to long- term disability or life insurance. She said that this has not had the same level of concern as health insurance and may be a reason that the federal and state governments have not acted on this. MS. O'CONNOR said that when counseling patients, they are told these things prior to genetic testing. If they are worried about potential discrimination, they may want to ensure that policies are in place prior to testing. This would ensure that rates cannot be retroactively amended if the patient tests positive. She concluded by noting that reviewing risks, benefits, and limitations is always part of the pre-test genetic counselling session. 4:27:38 PM CO-CHAIR HALL announced that HB 293 was held over.