SSA issued Social Security Ruling (SSR) 16-4p on April 13, 2016, which addresses Using Genetic Test Results to Evaluate Disability. https://www.ssa.gov/OP_Home/rulings/di/01/SSR2016-04-di-01.html
The SSR explains how SSA consider the results of genetic tests in disability claims and continuing disability reviews under titles II and XVI of the Social Security Act. According to SSA, “[G]enetic test results sometimes are a part of the objective medical evidence [used to determine the existence of a ‘medically determinable’ impairment] and can also be of value at other points in the sequential evaluation process. . . .”
SSA notes that genetic testing is becoming more commonplace and that genetic test results are showing up more and more in medical records submitted for disability determinations. In summarizing this SSR, SSA puts it this way: “The information that follows is presented in question and answer format and provides details about medical genetics and how to consider MER (‘medical evidence of record’) containing genetic test results under our disability policy.
Questions 1 through 3 provide basic background information about genetic tests and their use in the medical setting.
Question 4 discusses the relevance of genetic test results to our disability program.
Question 5 discusses whether genetic test results alone are sufficient to make a disability determination.
Question 6 clarifies that we do not purchase genetic testing.
Questions 7 through 11 specify how adjudicators should handle evidence containing genetic test results at various points of the adjudication process.
Question 12 addresses our policy on the disclosure of genetic information. . . .”
Note that SSA will not pay for genetic testing.
Also note, a “genetic counselor,” unless also a licensed physician, is not an “acceptable medical source” qualified to provide opinion evidence and cannot be the source of proof of a medically determinable impairment. Diagnosis of a genetic condition must be provided by a physician unless and until the regulations are changed. SSA recognizes, however, that “These professionals typically hold a master’s degree in Genetic Counseling and may be board-certified by the American Board of Genetic Counseling . . . We can use evidence from genetic counselors working in an independent capacity to show the severity of a person’s impairment and how it affects the person’s ability to work, or, for children, how the child typically functions compared to children of the same age who do not have impairments. . . .”
Genetic testing results alone do not suffice to determine disability, except in the case of non-mosaic Down syndrome (Listing of Impairments 10.06A / 110.06A. However, “[A]s genetic testing continues to advance, we will consider appropriate changes to our program policy. . . .”
Genetic testing results may, however, be essential to some disability determinations. For example, Listings 8.07, 10.06A, 10.06B, 108.07, 110.06A, and 110.06B, require genetic testing results in order for these impairments (genetic photosensitivity disorders and non-mosaic Down syndrome) to meet the listing.
Genetic testing results may be critical to certain determinations under the Listing of Impairments. SSA’s position at present, while imprecise, is that genetic testing results are not of much use in most determination of severity of impairment:
To some extent, genetic test results can be helpful in our overall impairment evaluation, but generally they do not help us determine whether or not an impairment is severe. For an impairment to be severe, it must significantly limit an adult’s physical or mental ability to do basic work activities. In the case of a child, for an impairment to be severe it must be more than a slight abnormality that causes more than minimal functional limitations [footnotes omitted]. . . .
The caution here is that “predictive” genetic test results, such as those showing the presence of genes associated with certain cancers, or “pre-symptomatic diagnos[e]s of a genetic condition” don’t suffice to establish the presence of a medically determinable impairment nor the resultant severity of limitations. However, “[I]n cases of a catastrophic congenital disorder, as detailed in listing 110.08, or other extreme cases, genetic test results alone may show a person’s impairment is severe.” The SSR also notes that a diagnosis of hemochromatosis may be confirmed by genetic test results.
While SSA is aware of genetic testing, it does not see it as the panacea for making accurate disability determinations, and it cannot use genetic testing results by themselves to establish that an individual does not meet the definition of “disabled.”
SSA published a correction to SSR 16-4p on April 21, 2016, removing the reference to SSR 96-7p, which was rescinded and replaced with SSR 16-3p, Evaluation of Symptoms in Disability Claims. 81 Fed. Reg. 23543 (April 21, 2016).