NHGRI logo

The following are research areas of interest that have been identified by the participating NIH institutes and centers (ICs). Program Officer contact information is also included.

National Human Genome Research Institute (NHGRI)

(R01, R21, R03)

The NHGRI is interested in research that addresses:

  • The ELSI that arise from genomic research and genomic health care across a broad spectrum of diseases and conditions,
     
  • The broader implications of the expansion of genomic research and genomic health care and of the use of genomic information in non-medical settings
     

This includes basic normative and conceptual research, and the development of tools and generation of data that can be applied across many different diseases and conditions.  Projects focused on a single disease or disorder may be of lower priority for NHGRI unless generalizability is clearly shown.  Examples of topics of specific interest to NHGRI are found in the R01R21, and R03 program announcements, and on NHGRI’s ELSI Research Domains webpage

Contacts:

Joy Boyer
National Human Genome Research Institute (NHGRI)
Telephone: 301-402-4997
Email: boyerj@mail.nih.gov

Dave Kaufman
National Human Genome Research Institute (NHGRI)
Telephone: 301-402-4997
Email: dave.kaufman@nih.gov

Nicole Lockhart
National Human Genome Research Institute (NHGRI)
Telephone: 301-402-4997
Email: lockhani@mail.nih.gov

Rene Sterling
National Human Genome Research Institute (NHGRI)
Telephone: 301-435-1275
Email: rene.sterling@nih.gov

  • National Human Genome Research Institute (NHGRI)

    (R01, R21, R03)

    The NHGRI is interested in research that addresses:

    • The ELSI that arise from genomic research and genomic health care across a broad spectrum of diseases and conditions,
       
    • The broader implications of the expansion of genomic research and genomic health care and of the use of genomic information in non-medical settings
       

    This includes basic normative and conceptual research, and the development of tools and generation of data that can be applied across many different diseases and conditions.  Projects focused on a single disease or disorder may be of lower priority for NHGRI unless generalizability is clearly shown.  Examples of topics of specific interest to NHGRI are found in the R01R21, and R03 program announcements, and on NHGRI’s ELSI Research Domains webpage

    Contacts:

    Joy Boyer
    National Human Genome Research Institute (NHGRI)
    Telephone: 301-402-4997
    Email: boyerj@mail.nih.gov

    Dave Kaufman
    National Human Genome Research Institute (NHGRI)
    Telephone: 301-402-4997
    Email: dave.kaufman@nih.gov

    Nicole Lockhart
    National Human Genome Research Institute (NHGRI)
    Telephone: 301-402-4997
    Email: lockhani@mail.nih.gov

    Rene Sterling
    National Human Genome Research Institute (NHGRI)
    Telephone: 301-435-1275
    Email: rene.sterling@nih.gov

National Cancer Institute (NCI)

(R01, R21, R03)

The NCI is interested in research that focuses on the ethical, legal and social issues related to cancer and genomics. In particular, the NCI is interested in the following:

  • Studies on the anticipated and actual psycho-social and behavioral impact of genetic and genomic information and delivery methods on affected individuals, their families, and populations
     
  • Studies that examine and aim to improve the communication processes and disclosure of information about cancer genetics and genomics in a variety of contexts (clinical encounters, telemedicine, family communication, direct-to-consumer advertising)
     
  • Studies that explore the emerging ethical, legal, and social implications of having individuals’ genetic and genomic information made available online (through social media, electronic medical records, telemedicine, and participation in research on the Internet)
     
  • Studies evaluating the ethical, legal, and/or social implications of communication strategies and tools used to share or disseminate genetic and genomic information with individuals, families, and communities/populations
     
  • Studies on the ethical, regulatory, and policy challenges in cancer research involving genetic and genomic information (e.g. clinical oncology trials, population-based studies, observational studies, etc.), including research on innovative approaches to those challenges
     
  • Studies on the issues raised by the collection, storage, and future research uses of biological samples and of associated data (e.g. participant preferences, informed consent, governance, privacy and security, and data sharing), including innovative approaches to these issues; additionally, multi-level studies examining patient, caregiver, provider, organizational, and health system perspectives on these issues
     
  • Studies that take into consideration the perspectives of diverse racial, ethnic and socioeconomic backgrounds, as well as children, older adults and people with disabilities (including perspectives on genomic-based targeted therapies)
     
  • Studies on models of participant and community engagement or participatory research methods in cancer genomics research
  • Studies on the ethical/legal/social implications of the use of genomic technologies to address cancer disparities
     
  • Studies addressing ethical/legal/social challenges of improving genomic-based targeted therapies for diverse subpopulations
     
  • Intervention studies that examine uptake of personalized genomic testing and the adoption of risk-reduction health behaviors (diet, physical activity, obesity/weight loss) after receiving testing results in diverse populations
     
  • Studies of how context affects use of genomic technologies and related patient outcomes of cancer care delivery (examples of context include community setting vs. academic setting, availability of relevant clinical expertise, extent of clinical team collaboration, patterns and channels of communication, and use of various IT systems)

 

The ultimate goal of this research will be to understand how people make sense of and act upon genetic and genomic information related to cancer; to inform the ethical conduct of cancer research involving genetic and genomic information and data; and overall to improve outcomes related to cancer.

Contact

Charlisse Caga-Anan
National Cancer Institute (NCI)
Telephone: 240-276-6738
Email: charlisse.caga-anan@nih.gov

  • National Cancer Institute (NCI)

    (R01, R21, R03)

    The NCI is interested in research that focuses on the ethical, legal and social issues related to cancer and genomics. In particular, the NCI is interested in the following:

    • Studies on the anticipated and actual psycho-social and behavioral impact of genetic and genomic information and delivery methods on affected individuals, their families, and populations
       
    • Studies that examine and aim to improve the communication processes and disclosure of information about cancer genetics and genomics in a variety of contexts (clinical encounters, telemedicine, family communication, direct-to-consumer advertising)
       
    • Studies that explore the emerging ethical, legal, and social implications of having individuals’ genetic and genomic information made available online (through social media, electronic medical records, telemedicine, and participation in research on the Internet)
       
    • Studies evaluating the ethical, legal, and/or social implications of communication strategies and tools used to share or disseminate genetic and genomic information with individuals, families, and communities/populations
       
    • Studies on the ethical, regulatory, and policy challenges in cancer research involving genetic and genomic information (e.g. clinical oncology trials, population-based studies, observational studies, etc.), including research on innovative approaches to those challenges
       
    • Studies on the issues raised by the collection, storage, and future research uses of biological samples and of associated data (e.g. participant preferences, informed consent, governance, privacy and security, and data sharing), including innovative approaches to these issues; additionally, multi-level studies examining patient, caregiver, provider, organizational, and health system perspectives on these issues
       
    • Studies that take into consideration the perspectives of diverse racial, ethnic and socioeconomic backgrounds, as well as children, older adults and people with disabilities (including perspectives on genomic-based targeted therapies)
       
    • Studies on models of participant and community engagement or participatory research methods in cancer genomics research
    • Studies on the ethical/legal/social implications of the use of genomic technologies to address cancer disparities
       
    • Studies addressing ethical/legal/social challenges of improving genomic-based targeted therapies for diverse subpopulations
       
    • Intervention studies that examine uptake of personalized genomic testing and the adoption of risk-reduction health behaviors (diet, physical activity, obesity/weight loss) after receiving testing results in diverse populations
       
    • Studies of how context affects use of genomic technologies and related patient outcomes of cancer care delivery (examples of context include community setting vs. academic setting, availability of relevant clinical expertise, extent of clinical team collaboration, patterns and channels of communication, and use of various IT systems)

     

    The ultimate goal of this research will be to understand how people make sense of and act upon genetic and genomic information related to cancer; to inform the ethical conduct of cancer research involving genetic and genomic information and data; and overall to improve outcomes related to cancer.

    Contact

    Charlisse Caga-Anan
    National Cancer Institute (NCI)
    Telephone: 240-276-6738
    Email: charlisse.caga-anan@nih.gov

National Eye Institute (NEI)

(R01 and R21)

The NEI is interested in addressing ethical, legal and social issues related to normal and disordered processes that evolve from genomic research in our mission areas of understanding mechanisms of visual function; preventing, treating, or reversing vision loss; and addressing the special health problems and requirements of the blind.

Contact:

Cheri Wiggs
National Eye Institute (NEI)
Telephone: 301-451-2020
Email: wiggsc@nei.nih.gov

  • National Eye Institute (NEI)

    (R01 and R21)

    The NEI is interested in addressing ethical, legal and social issues related to normal and disordered processes that evolve from genomic research in our mission areas of understanding mechanisms of visual function; preventing, treating, or reversing vision loss; and addressing the special health problems and requirements of the blind.

    Contact:

    Cheri Wiggs
    National Eye Institute (NEI)
    Telephone: 301-451-2020
    Email: wiggsc@nei.nih.gov

National Heart Lung and Blood Institute (NHLBI)

(R01 only)

The NHLBI is interested in research that focuses on the ethical, legal, social, and policy issues related to genetic and genomic research on heart, lung, blood, and sleep (HLBS) conditions, especially those that are relevant to its Strategic Vision.  NHLBI encourages applicants to consider developing novel collaborations between the ELSI and HLBS research communities.  ELSI research topics of particular interest to NHLBI include, but are not limited to, the following:

  • Genomic medicine and implementation science, such as the accelerated generation of evidence around the clinical utility of genomic variation, effective translation of genomic advances into clinical practice, or providing genomic education at scale to healthcare providers and patients
     
  • Genomic research in understudied or vulnerable populations, including culturally appropriate genomic research and education or development of ways to sustain genomic medicine interventions in low resource settings
     
  • Novel and emerging genomic technologies, such as gene editing, and their impacts on HLBS patients and communities
     
  • Privacy, confidentiality, and re-identification risks in large genomic datasets, especially when linking genomic data with other types of -omic, clinical, environmental, nationally representative database (e.g., census records), and sociocultural data to create multi-omic profiles; this may also include the ethical uses of and appropriate stewardship over large genomic datasets, or appropriateness of use of data (e.g. “digital footprints”) for a purpose other than that for which it was originally provided
     
  • Impact of NIH policy changes, such as updates to the management of genomic summary results
     
  • Expanding the training of new ELSI investigators to include topics relevant to HLBS genomic research
     
  • Genotype-driven recruitment approaches
     
  • Extension of ELSI research and considerations into other -omic datatypes, including transcriptomics, epigenomics, metabolomics, proteomics, and metagenomics

 

In addition to the issues listed above, NHLBI has a strong interest in ELSI research around the return of genetic/genomic research results (RoR) to study participants.  Such research may address, but is not limited to, the following:

  • Optimal timing of RoR relative to symptom onset, potential treatment or lifestyle modifications, and the life course
     
  • Unique considerations in family studies, such as cascade screening of participants’ family members
     
  • RoR cost-benefit analyses, including impact to research and value to participants
     
  • Benefits and harms associated with RoR, and ways to maximize benefits and minimize harms
     
  • RoR needs, values, input, and preferences among participants, communities, and populations, including potentially divergent RoR perspectives and priorities between researchers and participants/communities/populations
     
  • Communication of genetic risk results to participants efficiently and at scale with the appropriate clinical and cultural contextualization
     
  • Handoff between research and clinical care, particularly in health disparities populations
     
  • Issues specific to RoR with adolescents, such as assent or the impact of returning adult-onset disease risk information
     
  • RoR in “legacy” studies that did not originally consent for RoR
     
  • Large-scale, comprehensive approaches to (re)interpretation of the clinical validity and utility of genetic variants

 

Investigators are encouraged to contact NHLBI staff to discuss their ideas.

Contact:

Mollie Minear
National Heart Lung and Blood Institute (NHLBI)
Telephone: 301-435-0448
Email: mollie.minear@nih.gov

  • National Heart Lung and Blood Institute (NHLBI)

    (R01 only)

    The NHLBI is interested in research that focuses on the ethical, legal, social, and policy issues related to genetic and genomic research on heart, lung, blood, and sleep (HLBS) conditions, especially those that are relevant to its Strategic Vision.  NHLBI encourages applicants to consider developing novel collaborations between the ELSI and HLBS research communities.  ELSI research topics of particular interest to NHLBI include, but are not limited to, the following:

    • Genomic medicine and implementation science, such as the accelerated generation of evidence around the clinical utility of genomic variation, effective translation of genomic advances into clinical practice, or providing genomic education at scale to healthcare providers and patients
       
    • Genomic research in understudied or vulnerable populations, including culturally appropriate genomic research and education or development of ways to sustain genomic medicine interventions in low resource settings
       
    • Novel and emerging genomic technologies, such as gene editing, and their impacts on HLBS patients and communities
       
    • Privacy, confidentiality, and re-identification risks in large genomic datasets, especially when linking genomic data with other types of -omic, clinical, environmental, nationally representative database (e.g., census records), and sociocultural data to create multi-omic profiles; this may also include the ethical uses of and appropriate stewardship over large genomic datasets, or appropriateness of use of data (e.g. “digital footprints”) for a purpose other than that for which it was originally provided
       
    • Impact of NIH policy changes, such as updates to the management of genomic summary results
       
    • Expanding the training of new ELSI investigators to include topics relevant to HLBS genomic research
       
    • Genotype-driven recruitment approaches
       
    • Extension of ELSI research and considerations into other -omic datatypes, including transcriptomics, epigenomics, metabolomics, proteomics, and metagenomics

     

    In addition to the issues listed above, NHLBI has a strong interest in ELSI research around the return of genetic/genomic research results (RoR) to study participants.  Such research may address, but is not limited to, the following:

    • Optimal timing of RoR relative to symptom onset, potential treatment or lifestyle modifications, and the life course
       
    • Unique considerations in family studies, such as cascade screening of participants’ family members
       
    • RoR cost-benefit analyses, including impact to research and value to participants
       
    • Benefits and harms associated with RoR, and ways to maximize benefits and minimize harms
       
    • RoR needs, values, input, and preferences among participants, communities, and populations, including potentially divergent RoR perspectives and priorities between researchers and participants/communities/populations
       
    • Communication of genetic risk results to participants efficiently and at scale with the appropriate clinical and cultural contextualization
       
    • Handoff between research and clinical care, particularly in health disparities populations
       
    • Issues specific to RoR with adolescents, such as assent or the impact of returning adult-onset disease risk information
       
    • RoR in “legacy” studies that did not originally consent for RoR
       
    • Large-scale, comprehensive approaches to (re)interpretation of the clinical validity and utility of genetic variants

     

    Investigators are encouraged to contact NHLBI staff to discuss their ideas.

    Contact:

    Mollie Minear
    National Heart Lung and Blood Institute (NHLBI)
    Telephone: 301-435-0448
    Email: mollie.minear@nih.gov

National Institute on Aging (NIA)

(R01, R21, R03)

The NIA is interested in research that focuses on the ethical, legal and social issues related to aging and genomics.

  • The ethical, legal, and social issues that arise from genomic research and genomic health care across a broad spectrum of aging research incorporating genomics
     
  • The broader implications of the expansion of genomic research and genomic health care for the aging population
     
  • The use of genomic information on the aging population in medical and non-medical settings
     

This includes basic normative and conceptual research and the generation of data and development of tools that can be applied across aging and genomics, including Alzheimer’s Disease (AD) and Related Dementias (RD). 

Contact

Marilyn Miller
National Institute on Aging (NIA)
Telephone: 301-496-9350
Email: millerm@nia.nih.gov

  • National Institute on Aging (NIA)

    (R01, R21, R03)

    The NIA is interested in research that focuses on the ethical, legal and social issues related to aging and genomics.

    • The ethical, legal, and social issues that arise from genomic research and genomic health care across a broad spectrum of aging research incorporating genomics
       
    • The broader implications of the expansion of genomic research and genomic health care for the aging population
       
    • The use of genomic information on the aging population in medical and non-medical settings
       

    This includes basic normative and conceptual research and the generation of data and development of tools that can be applied across aging and genomics, including Alzheimer’s Disease (AD) and Related Dementias (RD). 

    Contact

    Marilyn Miller
    National Institute on Aging (NIA)
    Telephone: 301-496-9350
    Email: millerm@nia.nih.gov

National Institute of Environmental Health Sciences (NIEHS)

(R01, R21, R03)

The NIEHS is interested in addressing social, ethical, and legal concerns in research related to gene-environment interactions, environmental health hazards, genetic susceptibility to environmental exposures, and ELSI issues related to research involving children, aged populations, tribal communities, and other vulnerable populations impacted by specific environmental exposures. The potential evolving ELSI issues associated with developing improved health risk assessments that leverage emerging findings from combined epigenomics, exposomics, and genomics research is particularly welcome. NIEHS is additionally interested in research on the bioethical issues related to data sharing requirements of biosamples collected in environmental health studies in vulnerable or unique populations as well as the stigma associated with either identification of subpopulations at particular disease risk due to genetic susceptibility of environmental exposures or potential identification of individuals living in geographic areas linked to high exposures of environmental pollutants. 

Contact:

Kimberly A. McAllister
National Institute of Environmental Health Sciences (NIEHS)
Telephone: 984-287-3287
Email: mcallis2@niehs.nih.gov

  • National Institute of Environmental Health Sciences (NIEHS)

    (R01, R21, R03)

    The NIEHS is interested in addressing social, ethical, and legal concerns in research related to gene-environment interactions, environmental health hazards, genetic susceptibility to environmental exposures, and ELSI issues related to research involving children, aged populations, tribal communities, and other vulnerable populations impacted by specific environmental exposures. The potential evolving ELSI issues associated with developing improved health risk assessments that leverage emerging findings from combined epigenomics, exposomics, and genomics research is particularly welcome. NIEHS is additionally interested in research on the bioethical issues related to data sharing requirements of biosamples collected in environmental health studies in vulnerable or unique populations as well as the stigma associated with either identification of subpopulations at particular disease risk due to genetic susceptibility of environmental exposures or potential identification of individuals living in geographic areas linked to high exposures of environmental pollutants. 

    Contact:

    Kimberly A. McAllister
    National Institute of Environmental Health Sciences (NIEHS)
    Telephone: 984-287-3287
    Email: mcallis2@niehs.nih.gov

National Institute of Mental Health (NIMH)

(R01, R21, R03)

The NIMH is interested in research to address a range of ethical, legal and social issues for individuals and communities relevant to its core mission, and the subjects and disorders which it serves as a primary lead at the NIH.

Areas of emphasis include but are not limited to:

  • Implementation of psychiatric genomic medicine that takes into account cultural practices and values to promote inclusion and equity in mental health outcomes  
     
    • Studies on outreach and community engagement in neuropsychiatric genetics research study design and execution, especially the inclusion of diverse cultural values and perspectives from populations currently underrepresented in the scientific community and/or the research subject population whose populations may be the focus of increased recruitment efforts for neuropsychiatric research (See PAR-20-027 and PAR-20-026 - Genetic Architecture of Mental Disorders in Ancestrally Diverse Populations)
       
    •  Advance understanding on how to avoid or mitigate against stigmatization, group harms, and unintended negative social implications/exacerbations of structural inequalities when conducting research addressing the genomic underpinnings of cognitive and behavioral traits across the spectrum of human phenotypic variation (e.g. intelligence, sexual orientation, gender identity, socio-economic activities) when examined in the context of their contribution to risk and resilience in mental health outcomes
       
    • Research related to implications of investigating genetic risk for mental health disorders in communities that experience sustained systemic community stressors that may influence risk for poor mental health outcomes, such as the experience of marginalization, discrimination, and/or racism
       
    • Investigations into how to appropriately contextualize genetic information with environmental, cultural, intervention combinations and response, mental and physical health comorbidities, and societal (e.g. systemic racism) factors when assessing diagnosis, disorder trajectory, treatment recommendations, and drug-drug interactions in diverse patients
       
    • Research related to the implementation of Artificial Intelligence that integrates genetic information with environmental and other health information in the diagnosis and/or stratification of clinical populations for treatment. The goal should be developing efficient computational strategies to reduce model bias, improve data coverage, equity, fairness towards underrepresented minorities (e.g., through Generative Adversarial Networks & Digital-Twin technology)
       
  • Research on the use of genetic screening and genetic testing for neuropsychiatric disorders in medical practice, especially among vulnerable and/or underserved populations, including the implications for:
     
    • Ethical and cultural issues surrounding informed consent, data sharing, and privacy for data collected in a heath care setting (i.e. EHR or health-care system biobanks)
       
    • Return of results and communication of primary findings and secondary findings in a health care setting (e.g. how would the communication of the absence/presence of genetic findings influence patient behavior or encourage/discourage individuals from seeking treatment)
       
    • The ethical issues related to early intervention therapies (e.g. somatic gene editing, drugs, behavioral) for neuropsychiatric developmental conditions identified by genomic technologies, especially in 1) disorders with late childhood, adolescent or adult onset; or 2) early childhood onset disorders that present with a broad spectrum of severity in outcomes. These studies should consider differences in cultural practices and values across different communities
       
    • Use of genomics in Precision Medicine, both for clinical and personal decision making, including indications favoring specific interventions (e.g. genetic testing that suggests favoring biological rather than psychosocial interventions; pharmacogenomic testing favoring higher-risk treatments as potentially more effective than those with lower risk; absence/presence of genetic finding discouraging providers from considering all available treatment options)
       
    • Effects on the legal and regulatory landscape and existing structural inequalities. (e.g. avoiding discrimination in employment, housing, military service, etc. based on genetic risk of mental disorder and/or use of preventive interventions or services)
       
  • Studies on ethical, legal, and social implications raised by the collection, storage, and future research uses of biological samples and genetic data collected for neuropsychiatric research (e.g. participant preferences, informed consent, governance, privacy and security, and data sharing)
     
    • Risk assessment is needed for how changes in the science of a neuropsychiatric disease would impact the research subject community (i.e. those living with the disorder and their families who have contributed data or samples to prior research) with respect to informed consent. An example is the increased understanding of the genetic interrelatedness of neuropsychiatric disorders, pleiotropy and locus heterogeneity as it applies to consent for use in related disorder research. Assessment is needed to determine how such a change can most easily be appreciated by the study population and research subject community at large, and how these changes impact subjects understanding of informed consent and the ability to share data and samples 
       
    • Investigations relating to ethical and cultural issues raised by collections of data and samples from vulnerable and underserved populations in US, including Tribal communities, and populations in different cultural contexts in LMICs, whose populations may be the focus of increased recruitment efforts for neuropsychiatric research (See PAR-20-027 and PAR-20-026 - Genetic Architecture of Mental Disorders in Ancestrally Diverse Populations)

 

NIMH encourages projects that will partner with/embed within existing large-scale psychiatric genetics research efforts and others global research network to facilitate answering questions relevant to the execution of that research and implementation of the findings. Such networks include but are not limited to PsychENCODE, PsycheMERGE, Psychiatric Genomics Consortium, the Genomics Psychiatry Cohort, the Autism Sequencing Consortium, the Convergent Neuroscience Research Network, the Genes 2 Mental Health Network, Autism Biomarkers Consortium and the Global Mental Health Genetics Network, Collaborative Hubs for International Research in Mental Health and Collaborative Hubs to Reduce the Burden of Suicide among American Indian and Alaska Native Youth. NIMH also strongly encourages groups to leverage existing ELSI resources developed by NHGRI under prior ELSI funding calls.

NIMH will only award non-trials or mechanistic clinical trials under this announcement. Groups wishing to Address the Safety, Efficacy, and Effectiveness of Preventive, Therapeutic, and Services Interventions should apply through the NIMH Clinical Trial Pipeline.

Contacts:

Tara Dutka
National Institute of Mental Health (NIMH)
Telephone: 301-451-3074
Email: tara.dutka@nih.gov  

Geetha Senthil
National Institute of Mental Health (NIMH)
Telephone: 301-402-0754
Email: geetha.senthil2@nih.gov

  • National Institute of Mental Health (NIMH)

    (R01, R21, R03)

    The NIMH is interested in research to address a range of ethical, legal and social issues for individuals and communities relevant to its core mission, and the subjects and disorders which it serves as a primary lead at the NIH.

    Areas of emphasis include but are not limited to:

    • Implementation of psychiatric genomic medicine that takes into account cultural practices and values to promote inclusion and equity in mental health outcomes  
       
      • Studies on outreach and community engagement in neuropsychiatric genetics research study design and execution, especially the inclusion of diverse cultural values and perspectives from populations currently underrepresented in the scientific community and/or the research subject population whose populations may be the focus of increased recruitment efforts for neuropsychiatric research (See PAR-20-027 and PAR-20-026 - Genetic Architecture of Mental Disorders in Ancestrally Diverse Populations)
         
      •  Advance understanding on how to avoid or mitigate against stigmatization, group harms, and unintended negative social implications/exacerbations of structural inequalities when conducting research addressing the genomic underpinnings of cognitive and behavioral traits across the spectrum of human phenotypic variation (e.g. intelligence, sexual orientation, gender identity, socio-economic activities) when examined in the context of their contribution to risk and resilience in mental health outcomes
         
      • Research related to implications of investigating genetic risk for mental health disorders in communities that experience sustained systemic community stressors that may influence risk for poor mental health outcomes, such as the experience of marginalization, discrimination, and/or racism
         
      • Investigations into how to appropriately contextualize genetic information with environmental, cultural, intervention combinations and response, mental and physical health comorbidities, and societal (e.g. systemic racism) factors when assessing diagnosis, disorder trajectory, treatment recommendations, and drug-drug interactions in diverse patients
         
      • Research related to the implementation of Artificial Intelligence that integrates genetic information with environmental and other health information in the diagnosis and/or stratification of clinical populations for treatment. The goal should be developing efficient computational strategies to reduce model bias, improve data coverage, equity, fairness towards underrepresented minorities (e.g., through Generative Adversarial Networks & Digital-Twin technology)
         
    • Research on the use of genetic screening and genetic testing for neuropsychiatric disorders in medical practice, especially among vulnerable and/or underserved populations, including the implications for:
       
      • Ethical and cultural issues surrounding informed consent, data sharing, and privacy for data collected in a heath care setting (i.e. EHR or health-care system biobanks)
         
      • Return of results and communication of primary findings and secondary findings in a health care setting (e.g. how would the communication of the absence/presence of genetic findings influence patient behavior or encourage/discourage individuals from seeking treatment)
         
      • The ethical issues related to early intervention therapies (e.g. somatic gene editing, drugs, behavioral) for neuropsychiatric developmental conditions identified by genomic technologies, especially in 1) disorders with late childhood, adolescent or adult onset; or 2) early childhood onset disorders that present with a broad spectrum of severity in outcomes. These studies should consider differences in cultural practices and values across different communities
         
      • Use of genomics in Precision Medicine, both for clinical and personal decision making, including indications favoring specific interventions (e.g. genetic testing that suggests favoring biological rather than psychosocial interventions; pharmacogenomic testing favoring higher-risk treatments as potentially more effective than those with lower risk; absence/presence of genetic finding discouraging providers from considering all available treatment options)
         
      • Effects on the legal and regulatory landscape and existing structural inequalities. (e.g. avoiding discrimination in employment, housing, military service, etc. based on genetic risk of mental disorder and/or use of preventive interventions or services)
         
    • Studies on ethical, legal, and social implications raised by the collection, storage, and future research uses of biological samples and genetic data collected for neuropsychiatric research (e.g. participant preferences, informed consent, governance, privacy and security, and data sharing)
       
      • Risk assessment is needed for how changes in the science of a neuropsychiatric disease would impact the research subject community (i.e. those living with the disorder and their families who have contributed data or samples to prior research) with respect to informed consent. An example is the increased understanding of the genetic interrelatedness of neuropsychiatric disorders, pleiotropy and locus heterogeneity as it applies to consent for use in related disorder research. Assessment is needed to determine how such a change can most easily be appreciated by the study population and research subject community at large, and how these changes impact subjects understanding of informed consent and the ability to share data and samples 
         
      • Investigations relating to ethical and cultural issues raised by collections of data and samples from vulnerable and underserved populations in US, including Tribal communities, and populations in different cultural contexts in LMICs, whose populations may be the focus of increased recruitment efforts for neuropsychiatric research (See PAR-20-027 and PAR-20-026 - Genetic Architecture of Mental Disorders in Ancestrally Diverse Populations)

     

    NIMH encourages projects that will partner with/embed within existing large-scale psychiatric genetics research efforts and others global research network to facilitate answering questions relevant to the execution of that research and implementation of the findings. Such networks include but are not limited to PsychENCODE, PsycheMERGE, Psychiatric Genomics Consortium, the Genomics Psychiatry Cohort, the Autism Sequencing Consortium, the Convergent Neuroscience Research Network, the Genes 2 Mental Health Network, Autism Biomarkers Consortium and the Global Mental Health Genetics Network, Collaborative Hubs for International Research in Mental Health and Collaborative Hubs to Reduce the Burden of Suicide among American Indian and Alaska Native Youth. NIMH also strongly encourages groups to leverage existing ELSI resources developed by NHGRI under prior ELSI funding calls.

    NIMH will only award non-trials or mechanistic clinical trials under this announcement. Groups wishing to Address the Safety, Efficacy, and Effectiveness of Preventive, Therapeutic, and Services Interventions should apply through the NIMH Clinical Trial Pipeline.

    Contacts:

    Tara Dutka
    National Institute of Mental Health (NIMH)
    Telephone: 301-451-3074
    Email: tara.dutka@nih.gov  

    Geetha Senthil
    National Institute of Mental Health (NIMH)
    Telephone: 301-402-0754
    Email: geetha.senthil2@nih.gov

National Institute on Minority Health and Health Disparities (NIMHD)

(R01 only)

Minority and health disparities populations are underrepresented in genomic research with underrepresentation of people of non-European descent. Historical misuse of race and ethnicity data as population descriptors in genomics research has resulted in miscommunication of complex relationships between social identity, ancestry, socioeconomic status and health, perpetuating misguided ideas and mistrust. There is significant heterogeneity in the way race, ethnicity, and ancestry and self-identified race are operationalized within genomic research and health care.  NIMHD is interested in supporting research that will advance use of self-identified race and ethnicity (SIRE) and ancestry informative markers (AIMs) to enhance ability to describe research participants' diverse backgrounds and experiences in scientifically and socially meaningful ways in genomic research, genomic health care, and the broader societal legal and social arenas. NIMHD is also interested in supporting research that will advance creation of guidelines and adoption of consensus practices for the use of race, ethnicity, social determinants of health and ancestry data in study design, interpretation of results, publications, and medical care.

The research must focus on one or more U.S. minority or health disparity populations (African Americans/Blacks, Hispanics/Latinos, American Indians/Alaska Natives, Asians, Native Hawaiians and Other Pacific Islanders, socioeconomically disadvantaged populations, underserved rural populations, and sexual and gender minority populations). Research may use available secondary data, health system data and/or collection of primary data.  

Contact:

Nancy L. Jones
National Institute on Minority Health and Health Disparities (NIMHD)
Telephone: 301-594-8945
Email. nancy.jones@nih.gov

  • National Institute on Minority Health and Health Disparities (NIMHD)

    (R01 only)

    Minority and health disparities populations are underrepresented in genomic research with underrepresentation of people of non-European descent. Historical misuse of race and ethnicity data as population descriptors in genomics research has resulted in miscommunication of complex relationships between social identity, ancestry, socioeconomic status and health, perpetuating misguided ideas and mistrust. There is significant heterogeneity in the way race, ethnicity, and ancestry and self-identified race are operationalized within genomic research and health care.  NIMHD is interested in supporting research that will advance use of self-identified race and ethnicity (SIRE) and ancestry informative markers (AIMs) to enhance ability to describe research participants' diverse backgrounds and experiences in scientifically and socially meaningful ways in genomic research, genomic health care, and the broader societal legal and social arenas. NIMHD is also interested in supporting research that will advance creation of guidelines and adoption of consensus practices for the use of race, ethnicity, social determinants of health and ancestry data in study design, interpretation of results, publications, and medical care.

    The research must focus on one or more U.S. minority or health disparity populations (African Americans/Blacks, Hispanics/Latinos, American Indians/Alaska Natives, Asians, Native Hawaiians and Other Pacific Islanders, socioeconomically disadvantaged populations, underserved rural populations, and sexual and gender minority populations). Research may use available secondary data, health system data and/or collection of primary data.  

    Contact:

    Nancy L. Jones
    National Institute on Minority Health and Health Disparities (NIMHD)
    Telephone: 301-594-8945
    Email. nancy.jones@nih.gov

National Institute of Neurological Disorders and Stroke (NINDS)

(R01 and R21)

The NINDS is interested in research that addresses ethical, legal, and social issues for individuals and communities that emerge from human genome research in the domain of NINDS’s core mission and the topics and disorders for which NINDS serves as a primary lead at the NIH. Please visit: https://www.ninds.nih.gov/About-NINDS. Areas of interest specific to NINDS include but are not limited to the ethical, legal, and social implications of: aspects of neurogenetic research with human participants, such as differing stakeholder views on return of research results to participants or patient consent-related issues; neurogenetic research with human brain tissue; collecting and sharing human neurogenetic data, such as de-identification, privacy, and re-use practices; predictive/diagnostic neurogenetic research related to brain disorders; management and understanding of uncertain individual neurogenetic research results and secondary findings; and issues pertaining to neurogenetic research with children, patients with rare diseases, and other vulnerable populations.

Contact:

Khara Ramos
National Institute of Neurological Disorders and Stroke (NINDS)
Telephone: 301-594-2614
Email: khara.ramos@nih.gov

  • National Institute of Neurological Disorders and Stroke (NINDS)

    (R01 and R21)

    The NINDS is interested in research that addresses ethical, legal, and social issues for individuals and communities that emerge from human genome research in the domain of NINDS’s core mission and the topics and disorders for which NINDS serves as a primary lead at the NIH. Please visit: https://www.ninds.nih.gov/About-NINDS. Areas of interest specific to NINDS include but are not limited to the ethical, legal, and social implications of: aspects of neurogenetic research with human participants, such as differing stakeholder views on return of research results to participants or patient consent-related issues; neurogenetic research with human brain tissue; collecting and sharing human neurogenetic data, such as de-identification, privacy, and re-use practices; predictive/diagnostic neurogenetic research related to brain disorders; management and understanding of uncertain individual neurogenetic research results and secondary findings; and issues pertaining to neurogenetic research with children, patients with rare diseases, and other vulnerable populations.

    Contact:

    Khara Ramos
    National Institute of Neurological Disorders and Stroke (NINDS)
    Telephone: 301-594-2614
    Email: khara.ramos@nih.gov

The Fogarty International Center (FIC)

(R03 only)

The Fogarty International Center (FIC) is interested in supporting research on ethical issues related to human genome research relevant to low and middle income countries, in particular, studies conducted by investigators in these countries.

Contact

Barbara Sina
Fogarty International Center (FIC)
Telephone: 301-402-9467
Email: sinab@mail.nih.gov

  • The Fogarty International Center (FIC)
    (R03 only)

    The Fogarty International Center (FIC) is interested in supporting research on ethical issues related to human genome research relevant to low and middle income countries, in particular, studies conducted by investigators in these countries.

    Contact

    Barbara Sina
    Fogarty International Center (FIC)
    Telephone: 301-402-9467
    Email: sinab@mail.nih.gov

Last updated: July 31, 2020