Report on health of Middle Eastern and North African population

(a) Study required The Secretary of Health and Human Services (referred to in this section as the Secretary) shall conduct or support a comprehensive study regarding the unique health patterns and outcomes of MENA populations. (b) Requirements for study The comprehensive study under subsection (a) shall include an enumeration of MENA populations across the United States, disaggregated by subpopulation, and with respect to each such population and subpopulation— (1) the rates of— (A) health risk factors, including— (i) behaviors, such as tobacco use, excessive alcohol consumption, physical inactivity, and unhealthy diet; (ii) physiological factors, such as obesity, diabetes, high blood pressure, high blood sugar, and high cholesterol; (iii) environmental factors, such as exposure to toxic chemicals, air and water pollution, and unsafe working conditions, including prevalence of work-related injuries; (iv) genetic factors, such as family history of chronic diseases, presence of specific gene mutations, and racial and ethnic predisposition to certain conditions; (v) demographic characteristics, such as age, geographic location, and English language proficiency; and (vi) social determinants of health, such as household income, health insurance coverage, socioeconomic status, education level, housing instability, educational and employment opportunities, and access to culturally and linguistically appropriate service providers; (B) prevalence of chronic disease or illness, including— (i) cancers, such as breast, lung, cervical, prostate, colorectal, liver, stomach, and oral cancer; (ii) cardiovascular conditions, such as heart disease, atrial fibrillation, and stroke; (iii) respiratory conditions, such as asthma, chronic obstructive pulmonary disease, and lung disease; (iv) musculoskeletal conditions, such as osteoporosis and carpal tunnel syndrome; (v) neurological conditions, such as Parkinson’s disease, Alzheimer’s and other related dementias, epilepsy, and cerebral palsy; (vi) infectious diseases, such as HIV/AIDS, hepatitis B and C, and tuberculosis; and (vii) autoimmune diseases, such as lupus, multiple sclerosis, ulcerative colitis, and rheumatoid arthritis; (C) prevalence of disability and disorder, including— (i) vision impairments, such as blindness and low vision; (ii) hearing conditions, such as deafness and varying degrees of hearing loss; (iii) physical impairments, such as musculoskeletal conditions, amputation, paralysis, repetitive strain injuries, and other conditions that affect movement or require assistive devices; (iv) intellectual or developmental conditions, such as Down syndrome, Prater-Willi syndrome, Angelman syndrome, autism, and attention-deficit/hyperactive disorder (ADHD), as well as other conditions that affect cognitive abilities, learning, and adaptive behaviors; (v) mental or behavioral conditions, such as depression, anxiety, insomnia, sleep apnea, bipolar disorder, schizophrenia, and traumatic brain injury; (vi) substance use disorders, such as disorders in use of alcohol, opioids, stimulants, and cannabis, and risk factors stemming from such disorders, such as liver damage and gastrointestinal issues; (vii) genetic or blood disorders, such as sickle cell anemia, G6PD deficiency, hypertension, and thalassemia; and (viii) endocrine disorders, such as diabetes, polycystic ovary syndrome (PCOS), and hypothyroidism; (D) maternal and reproductive health outcomes, including maternal morbidity and mortality, infertility, and postpartum depression; (E) nutritional health outcomes, including malnutrition, vitamin D and iron deficiencies, among other vitamin deficiencies; (F) child and adolescent health outcomes, such as pediatric developmental delays, childhood obesity, and early-onset chronic conditions; (G) dental and oral health outcomes, including tooth loss, gum disease, and tooth decay; (H) domestic violence, dating violence, sexual assault, sexual harassment, and stalking; and (I) morbidity and mortality, including the rates of morbidity and mortality associated with the rates referenced in subparagraphs (A) through (H); (2) analysis of— (A) the factors and conditions that contribute most to— (i) the rates described in paragraph (1); and (ii) the rates by which MENA subpopulations reported the outcomes referenced in subparagraphs (B) and (C) as a disease, illness, disorder, or disability; (B) the leading causes of morbidity and mortality and pregnancy-associated morbidity and mortality; (C) the extent to which access to health care facilities contributes to the associated outcomes of care, including the rates described in paragraph (1); and (D) the disparities between MENA subpopulations and between the aggregate MENA population and other racial and ethnic populations in the rates described in paragraph (1); (3) analysis, enumeration, or quantification of any other health or health-related parameters the Secretary determines necessary; and (4) analysis of the extent to which any or all of the design, implementation, and evaluation of Federal health programs contribute to the health factors, outcomes, and conditions described in paragraphs (1) through (3). (c) Consultation The Secretary shall— (1) carry out this section in consultation, as appropriate, with the Director of the Census Bureau, the Director of the Centers for Disease Control and Prevention, the Director of the National Institutes of Health, the Assistant Secretary for Mental Health and Substance Use, and other stakeholders (including community-based organizations); and (2) determine through such consultation the subpopulations to be used for purposes of disaggregation of data pursuant to subsection (b). (d) Online portal Upon conclusion of the comprehensive study under this section, the Secretary shall establish a public online portal to catalogue the results of the study, its underlying data, and information in the report submitted pursuant to subsection (e)(2). (e) Reporting (1) Interim report Not later than 2 years after the date of enactment of this Act, the Secretary shall submit to Congress a report outlining the challenges associated with, and progress toward implementing, health data collection for MENA populations as a distinct category and the plan for completing a comprehensive study regarding the unique health patterns and outcomes of MENA populations. (2) Final report Not later than 30 days after the conclusion of the comprehensive study under this section, and not later than 2 years after the date of submission of the interim report under paragraph (1), the Secretary shall submit to Congress a report describing— (A) the results of the study conducted under this section; and (B) the rulemakings and other actions the agencies described in subsection (c)(1) can undertake to more equitably include MENA individuals in their programs, including whether and to what extent additional resources are needed to increase rates of response among MENA populations to Federal health surveys. (f) Privacy (1) In general In carrying out the comprehensive study under this section, the Secretary shall implement robust privacy protections to safeguard the personal data of the individuals involved. (2) Minimum protections The privacy protections referred to in paragraph (1) include the following: (A) Personally identifiable information, such as names or addresses, shall not be collected when unnecessary for the purposes of the study. (B) Any personally identifiable information that is collected shall be securely destroyed upon completion of the intended use of such information. (C) All privacy protections and data handling procedures shall be clearly communicated to any individuals who may be subjects of the study, including through informed consent if applicable. (3) Prohibition on inclusion of PII in online portal or reports The Secretary shall not include any personally identifiable information on the online portal under subsection (d) or in the reports under subsection (e). (g) Violations Any person who, by virtue of an official position or affiliation with the Secretary— (1) has possession of, or access to, any record containing individually identifiable information the disclosure of which is prohibited by or under this section; and (2) knowingly discloses such a record to any person or agency not entitled to receive the record, shall be guilty of a misdemeanor and fined not more than $25,000. (h) Personally identifiable information defined In this section, the term personally identifiable information means individually identifying information for or about an individual, including information likely to disclose the location or specific identity of a participating individual, regardless of whether the information is encoded, encrypted, hashed, or otherwise protected, including— (1) a first and last name; (2) a home or other physical address; (3) contact information (including a postal, email or internet protocol address, or telephone or facsimile number); (4) a social security number, driver license number, passport number, or student identification number; and (5) any other information, including date of birth, racial or ethnic background, or religious affiliation, that would serve to identify any individual. (i) Authorization of appropriations There are authorized to be appropriated such sums as may be necessary to carry out this section.