Genetic Services: Information on Genetic Counselor and Medical Geneticist Workforces

What GAO Found

Genetic counselors and medical geneticists are two groups who typically work together to provide genetic services, such as genetic testing and counseling. Genetic counselors have at least a master’s degree in genetic counseling and assess individuals or families with or at risk for genetic conditions, and provide counseling and education on test results. Medical geneticists are typically physicians who specialize in medical genetics and genomics, and provide comprehensive genetic services, ranging from diagnosis and interpretation of test results to the management and treatment of genetic conditions.

GAO’s analysis of data from the professional organizations representing this workforce shows the number of genetic counselors certified to provide genetic counseling services has nearly doubled since 2009, and is projected to continue growing. The data show there were approximately 4,700 certified genetics counselors in the United States in 2019. The data also show the number of new medical geneticists has increased modestly since 2009, and the total number certified in the United States was approximately 1,240 as of April 2020. There is no widely accepted measure for how many genetic counselors and medical geneticists should be available; however, representatives from professional organizations GAO interviewed stated that demand for genetic services is rising.

Data from the professional organizations representing the genetic counselor and medical geneticist workforces, as well as data from the Census Bureau, also show the number of genetic counselors and medical geneticists varied across states. States averaged seven genetic counselors per 500,000 people in 2019 and two medical geneticists per 500,000 people in 2020. Genetic counselors and medical geneticists primarily practice in hospital settings.

Distribution of Genetic Counselors by State, 2019

Why GAO Did This Study

Advances in genetic technology and research have increased the amount of information available to individuals and providers, and may have increased the demand for genetic services. The medical genetics workforce—which includes genetic counselors and medical geneticists—plays an essential role in providing access to genetic services. Some studies have identified concerns with the size of the medical genetics workforce and its ability to meet the current and future demand for genetic services.

A House Committee on Appropriations report included a provision for GAO to conduct an analysis of the medical genetics workforce. This report describes, among other objectives, what is known about changes in the size of the genetic counselor and medical geneticist workforces; and what is known about the geographic distribution of these workforces.

GAO reviewed relevant studies of the genetic counselor and medical geneticist workforces; interviewed agency officials and professional organizations representing each workforce; and analyzed the most recent available data on the size and distribution of each workforce in the United States, as well as population data from the Census Bureau.

GAO provided a draft of this report to the Department of Health and Human Services and the Department of Labor. The Department of Health and Human Services provided technical comments, which GAO incorporated as appropriate.

For more information, contact James Cosgrove at (202) 512-7114 or CosgroveJ@gao.gov.

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    Critical technologies—such as elements of artificial intelligence and biotechnology—are those necessary to maintain U.S. technological superiority. As such, they are frequently the target of theft, espionage, and illegal export by adversaries. The Department of Defense (DOD) has outlined a revised process (see figure) to better identify and protect its critical technologies including those associated with acquisition programs throughout their lifecycle or those early in development. Prior DOD efforts to identify these technologies were considered by some military officials to be too broad to adequately guide protection. The revised process is expected to address this by offering more specificity about what elements of an acquisition program or technology need to be protected and the protection measures DOD is expected to implement. It is also expected to support DOD's annual input to the National Strategy for Critical and Emerging Technologies, which was first published in October 2020. Overview of DOD's Revised Process to Identify and Protect Critical Acquisition Programs and Technologies DOD began implementing this process in February 2020, and officials expect to complete all steps for the first time by September 2021. DOD has focused on identifying critical acquisition programs and technologies that need to be protected and how they should be protected. It has not yet determined how it will communicate the list internally and to other agencies, which metrics it will use to assess protection measures, and which organization will oversee future protection efforts. By determining the approach for completing these tasks, DOD can better ensure its revised process will support the protection of critical acquisition programs and technologies consistently across the department. Once completed, the revised process should also inform DOD and other federal agencies' protection efforts. Military officials stated they could use the list of critical acquisition programs and technologies to better direct resources. Officials from the Departments of State, Commerce, and the Treasury stated that they could use the list, if it is effectively communicated, to better understand what is important to DOD to help ensure protection through their respective programs. The federal government spends billions annually to develop and acquire advanced technologies. It permits the sale and transfer of some of these technologies to allies to promote U.S. national security, foreign policy, and economic interests. However, the technologies can be targets for adversaries. The John S. McCain National Defense Authorization Act for Fiscal Year 2019 requires the Secretary of Defense to develop and maintain a list of acquisition programs, technologies, manufacturing capabilities, and research areas that are critical for preserving U.S. national security advantages. Ensuring effective protection of critical technologies has been included on GAO's high-risk list since 2007. This report examines (1) DOD's efforts to identify and protect its critical technologies, and (2) opportunities for these efforts to inform government protection activities. GAO analyzed DOD critical acquisition program and technologies documentation, and held interviews with senior officials at DOD and other federal agencies responsible for protecting critical technologies. GAO is recommending that DOD specify how it will communicate its critical programs and technologies list, develop metrics to assess protection measures, and select the DOD organization that will oversee protection efforts beyond 2020. DOD concurred with the first recommendation and partially concurred with the second and third. GAO maintains the importance of all recommendations in this report. For more information, contact William Russell at (202) 512-4841 or russellw@gao.gov.
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    Seven individuals across two states were charged in an indictment unsealed today for their alleged participation in a scheme to obtain approximately $16 million in forgivable Paycheck Protection Program (PPP) loans guaranteed by the Small Business Administration (SBA) under the Coronavirus Aid, Relief, and Economic Security (CARES) Act.
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    The Justice Department announced today that a federal court in Orlando, Florida, permanently enjoined Advanced Tax Services Inc. and Genson Financial Group LLC from preparing federal tax returns for others and ordered the businesses to disgorge $710,191.55, jointly and severally, representing the ill-gotten gains that they received for the preparation of tax returns. The court also entered permanent injunctions and disgorgement judgments against defendants Lenorris Lamoute and Dosuld Pierre, whom the court found prepared tax returns for compensation at Advanced Tax Services. The order was entered on default because the defendants failed to defend against the government’s allegations.
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  • Federal Research: Agencies Need to Enhance Policies to Address Foreign Influence
    In U.S GAO News
    U.S. research may be subject to undue foreign influence in cases where a researcher has a foreign conflict of interest (COI). Federal grant-making agencies can address this threat by implementing COI policies and requiring the disclosure of information that may indicate potential conflicts. GAO reviewed five agencies—which together accounted for almost 90 percent of all federal research and development expenditures at universities in fiscal year 2018—and found that three have agency-wide COI policies, while two do not (see figure). The three agencies with existing policies focus on financial interests but do not specifically address or define non-financial interests, such as multiple professional appointments. In the absence of agency-wide COI policies and definitions on non-financial interests, researchers may not fully understand what they need to report on their grant proposals, leaving agencies with incomplete information to assess the risk of foreign influence. GAO found that, regardless of whether an agency has a conflict of interest policy, all five agencies require researchers to disclose information—such as foreign support for their research—as part of the grant proposal that could be used to determine if certain conflicts exist. Elements of Conflict of Interest (COI) Policies at Agencies with the Most Federal Research Expenditures at Universities Based on a review of university documents, GAO found that all 11 of the universities in its sample have publicly available financial and non-financial COI policies for federally funded research. These policies often align with the financial COI policies or requirements of the grant-making agencies. All five agencies have mechanisms to monitor and enforce their policies and disclosure requirements when there is an alleged failure to disclose required information. All agencies rely on universities to monitor financial COI, and most agencies collect non-financial information such as foreign collaborations, that can help determine if conflicts exist. Agencies have also taken actions in cases where they identified researchers who failed to disclose financial or non-financial information. However, three agencies lack written procedures for handling allegations of failure to disclose required information. Written procedures for addressing alleged failure to disclose required information help agencies manage these allegations and consistently apply enforcement actions. In interviews, stakeholders identified opportunities to improve responses to foreign threats to research, such as harmonizing grant application requirements. Agencies have begun to address such issues. The federal government reportedly expended about $42 billion on science and engineering research at universities in fiscal year 2018. Safeguarding the U.S. research enterprise from threats of foreign influence is of critical importance. Recent reports by GAO and others have noted challenges faced by the research community to combat undue foreign influence, while maintaining an open research environment that fosters collaboration, transparency, and the free exchange of ideas. GAO was asked to review federal agency and university COI policies and disclosure requirements. In this report, GAO examines (1) COI policies and disclosure requirements at selected agencies and universities that address potential foreign threats, (2) mechanisms to monitor and enforce policies and requirements, and (3) the views of selected stakeholders on how to better address foreign threats to federally funded research. GAO reviewed laws, regulations, federal guidance, and agency and university COI policies and requirements. GAO also interviewed agency officials, university officials, and researchers. GAO is making nine recommendations to six agencies, including that grant-making agencies address non-financial conflicts of interest in their COI policies and develop written procedures for addressing cases of failure to disclose required information. Five agencies agreed with GAO's recommendations. The National Science Foundation neither agreed nor disagreed with GAO's recommendation, but identified actions it plans to take in response. For more information, contact Candice N. Wright at (202) 512-6888 or wrightc@gao.gov.
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  • Natural Disasters: Economic Effects of Hurricanes Katrina, Sandy, Harvey, and Irma
    In U.S GAO News
    Between January 1980 and July 2020, the United States experienced 273 climate and weather disasters causing more than $1 billion in damages each, according to NOAA. The total cost of damages from these disasters exceeded $1.79 trillion, with hurricanes and tropical storms accounting for over 50 percent of these damages, according to NOAA. Across the regions affected by these hurricanes over the period from 2005 to 2015, CBO estimated that federal disaster assistance covered, on average, 62 percent of the damage costs. GAO has reported that the rising number of natural disasters and reliance on federal disaster assistance is a key source of federal fiscal exposure. GAO was asked to review the costs of natural disasters and their effects on communities. This report examines (1) estimates of the costs of damages caused by hurricanes and hurricanes' effects on overall economic activity and employment in the areas they affected, and (2) actions subsequently taken in those areas to improve resilience to future natural disasters. GAO conducted case studies of Hurricanes Katrina, Sandy, Harvey, and Irma, selected for two reasons. First, they were declared a major disaster by the President under the Robert T. Stafford Disaster Relief and Emergency Assistance Act, which establishes key programs through which the federal government provides disaster assistance, primarily through FEMA. Second, they had sizable effects on the 50 U.S. states and the District of Columbia during the period from 2004 through 2018. GAO analyzed federal agency and other data on costs, economic activity, employment, and recovery and mitigation projects in selected areas affected by these hurricanes. GAO also visited selected recovery and mitigation project sites; interviewed experts and federal, state, and local government officials; and reviewed federal, state, and local government reports and academic studies. Hurricanes Katrina, Sandy, Harvey, and Irma (selected hurricanes) caused costly damages and challenges for some populations in affected communities. In these communities, the National Oceanic and Atmospheric Administration (NOAA) estimated the cost of damages to be approximately $170 billion for Katrina, $74 billion for Sandy, $131 billion for Harvey, and $52 billion for Irma. These estimates include the value of damages to residential, commercial, and government or municipal buildings; material assets within the buildings; business interruption; vehicles and boats; offshore energy platforms; public infrastructure; and agricultural assets. These hurricanes were also costly to the federal government. For example, in 2016, the Congressional Budget Office (CBO) estimated that federal spending exceeded $110 billion in response to Katrina and $53 billion in response to Sandy. GAO analysis suggests that the selected hurricanes were associated with widely varying effects on overall economic activity and total employment in affected metropolitan areas and counties. Economic activity was lower than expected in the month of the hurricane or some of the three subsequent months in three of the affected metropolitan areas GAO analyzed. Within one year, average economic activity in these three metropolitan areas was similar to or greater than what it had been the year before the hurricane. Total employment was lower than expected in the month of the hurricane or some of the three subsequent months in 80 of the affected counties GAO analyzed. Total employment was higher than pre-hurricane employment on average in 47 of those counties within one year but remained below pre-hurricane employment on average in the other 33 counties for at least one year. Finally, state and local government officials said that the selected hurricanes had significant impacts on communities, local governments, households, and businesses with fewer resources and less expertise, and that challenges faced by households may have impacted local businesses. Communities affected by selected hurricanes have been taking actions to improve resilience, but multiple factors can affect their decisions. Actions taken after selected hurricanes include elevating, acquiring, and rehabilitating homes; flood-proofing public buildings; repairing and upgrading critical infrastructure; constructing flood barriers; and updating building codes. A community’s decision to take resilience actions can depend on the costs and benefits of those actions to the community. Multiple factors affect these costs and benefits, including the likelihood, severity, and location of future disasters, as well as the amount of federal assistance available after a disaster. Finally, vulnerabilities remain in areas affected by selected hurricanes. For example, state and local government officials indicated that many older homes in these areas do not meet current building codes. In reports to the Federal Emergency Management Agency (FEMA), states indicate they anticipate that the scope of damages via exposure to weather hazards, such as hurricanes, will likely remain high and could expand across regions affected by the selected hurricanes. In addition, some local governments have projected that population will grow in the regions affected by selected hurricanes. For more information, contact Oliver Richard at 202-512-8424 or richardo@gao.gov.
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  • Military Housing: Actions Needed to Improve the Process for Setting Allowances for Servicemembers and Calculating Payments for Privatized Housing Projects
    In U.S GAO News
    The Department of Defense (DOD) has established a process to determine basic allowance for housing (BAH) rates, which help cover the cost of suitable housing in the private sector for servicemembers. However, DOD has not always collected rental data on the minimum number of rental units needed to estimate the total housing cost for certain locations and housing types. GAO analysis found that 44 percent (788 of 1,806) of locations and housing types had fewer than the minimum sample-size target. Until DOD develops ways to increase its sample size, it will risk providing housing cost compensation that does not accurately represent the cost of suitable housing for servicemembers. DOD followed congressional requirements for calculating BAH reductions and payments to privatized housing projects. However, while the 2019 congressionally mandated payments lessened the financial effects of BAH reductions, as intended, they did not do so commensurate with the amount of the BAH reduction. GAO found that privatized housing projects received payments that were either over or under the amount of revenue lost from reductions made to BAH, in some cases by $1 million or more. (see figure) Number of Privatized Housing Projects and Amounts That Congressionally Mandated Payments Were Above or Below the Basic Allowance for Housing (BAH) Reduction Estimate (in 2019) These distortions occurred because the legal requirements for calculating the BAH reduction and the congressionally mandated payments differ. Specifically, the law requires that the BAH reduction be a set dollar amount, regardless of location, while payments to privatized housing projects are required to differ by location. This required method of calculating the BAH reduction amounts is consistent with how prior reductions were calculated. According to DOD, BAH rates were reduced so that servicemembers share a portion of housing costs, and that reduction amount was the same for servicemembers with the same pay grade and dependency status, regardless of location. Until Congress takes steps to ensure congressionally mandated payment calculations are consistent with how BAH reductions are calculated, some privatized housing projects will continue to receive more or less than was intended. DOD spent about $20 billion in fiscal year 2019 on BAH—often one of the largest components of military pay. BAH is designed to cover a portion of servicemembers' housing rental and utility costs in the private sector. Starting in 2015, DOD reduced BAH rates so that servicemembers share a portion of housing costs. The majority of servicemembers rely on the civilian housing market, while others rely on government housing or privatized housing projects. These projects rely on BAH as a key revenue source. In 2018-2020, Congress required DOD to make payments to these projects to help offset the BAH reduction. Senate Report 116-48 included a provision for GAO to review DOD's BAH process. This report evaluates, among other things, the extent to which (1) DOD established a process to determine BAH and (2) DOD's congressionally mandated payments to projects lessened the effects of BAH reductions. To conduct this work, GAO reviewed relevant guidance and other documents, analyzed key data, and interviewed cognizant DOD officials. GAO is making a matter for congressional consideration to revise statutory language to ensure payments to privatized housing projects are consistent with BAH reductions. GAO is also making three recommendations, including that DOD review its sampling methodology to increase sample size. DOD concurred with two recommendations. DOD also partially concurred with one recommendation, which GAO continues to believe is valid, as discussed in the report. For more information, contact Elizabeth A. Field at (202) 512-2775 or fielde1@gao.gov.
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