Stephanie M Fullerton
Biographic Data
| ID | 226921 |
|---|---|
| NAME | Stephanie M Fullerton |
| GIVEN NAMES | Stephanie M |
| FAMILY NAME | Fullerton |
| SIGNATURE | FULLERTON S M |
| AFFILIATIONS | University of Washington |
| ORCID | 0000-0002-0938-6048 |
| VERIFIED | Yes |
| TOTAL WORKS | 14 |
| TOTAL CITATIONS | 16 |
| AUTHOR COUNT | 14 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 2005 |
| LATEST PUBLICATION YEAR | 2024 |
| H-INDEX | 2 |
A conjunctural analysis of the origins of ‘embedded Elsi’ in U.S. genomic medicine
Calls to identify, explore, and address ethical and social issues as part of the design and implementation of scientific research are now widespread. One way of doing so is through an embedded approach, where ethical, legal, and social implications (ELSI) researchers are situated within larger scientific research studies. We trace the emergence of the ‘embedded ELSI’ approach to integration alongside the development of genomic medicine. In partic…
Strategies of inclusion
US funding agencies have begun to institutionalize expectations that biomedical studies achieve defined thresholds for diversity among research participants, including in precision medicine research (PMR). In this paper, we examine how practices of recruitment have unfolded in the wake of these diversity mandates. We find that a very common approach to seeking diverse participants leverages understandings of spatial, geographic, and site diversit…
Stakeholder Perspectives on Returning Nonactionable Apolipoprotein L1 (Apol1) Genetic Results to African American Research Participants
Conclusions: APOL1 results should be offered to participants. Responsibly fulfilling this offer requires careful identification of best communication practices, broader education about the topic, and ongoing community engagement
Ethical Considerations in the Use of Direct-to-Consumer Genetic Testing for Adopted Persons
The use of DTC genetic testing to identify health risks is increasingly popular. This is particularly the case for adopted persons, who often lack access to family health history information and who may see genetic testing as the best (and only) way to identify potential inherited disease risks. However, the development of genetic testing to fill gaps in family health history information for adopted persons has been hindered by several challenges…
It would be so much easier”
Assess the feasibility and acceptability of health system-led genetic risk notification in a US integrated health system. We conducted semi-structured phone interviews with individuals age 40-64 years who had undergone genetic sequencing, but had not yet received their results, assessing attitudes to direct outreach to relatives. During each interview, we collected contact information for adult relatives identified as members of the same system a…
Genomics is failing on diversity
Engaging Study Participants in Research Dissemination at a Center for Population Health and Health Disparities
Focus groups informed PUEDO's dissemination strategy, which concentrates on study participants and the regional Latino community. This approach to dissemination should maximize information uptake and community benefit
Allocation of Resources to Communication of Research Result Summaries
Researchers and policymakers recommend communicating summary research results to biobank participants when feasible. To date, however, there have been few explorations of participant preferences for dedicating resources to this activity. Fifteen semi-structured interviews were conducted with participants of a genetic medicine biobank. Participants were interviewed by phone about their motivation for participation, and opinions about the allocatio…
Rural Mexican-Americans’ perceptions of family health history, genetics, and disease risk
Awareness of Federal Regulatory Mechanisms Relevant to Community-Engaged Research
Few studies or investigators involved in community-engaged research or community-based participatory research have examined awareness and adoption of federal regulatory mechanisms. We conducted a survey of investigators affiliated with the 10 National Institutes of Health (NIH) Centers for Population Health and Health Disparities. A questionnaire designed to capture experience with the conduct and oversight of community-engaged research, and awar…
Using Genetically Informed, Randomized Prevention Trials to Test Etiological Hypotheses About Child and Adolescent Drug Use and Psychopathology
In this essay, we describe a new era of public health research in which prevention science principles are combined with genomic science to produce gene × intervention (G×I) research. We note the roles of behavioral and molecular genetics in risk and protective mechanisms for drug use and psychopathology among children and adolescents, and the results of first-generation genetically informed prevention trials are reviewed. We also consider the nee…
Parent Perspectives on Pediatric Genetic Research and Implications for Genotype-Driven Research Recruitment
As genetic research is increasingly conducted in children, it is important to understand how parents make decisions about enrolling their children and what they think about receiving their children's genetic research results. We conducted semi-structured phone interviews with 23 parents of children enrolled in genetic studies of autism or diabetes. Qualitative thematic analysis focused on two important components of genetic research and genotype-…
Glad You Asked
No consensus exists about when researchers need additional participant consent (reconsent) to submit existing data to the federal database of Genotypes and Phenotypes (dbGaP). Re-consent for submission of their data to dbGaP was sought from 1,340 study participants, 1,159 (86%) of whom agreed. We invited the first 400 of those who agreed to complete a telephone survey about their reasoning for their consent decision and their satisfaction with th…
Racing around, getting nowhere
Arguments about race recycle endlessly because the truths we think we're chasing are always chasing us. Maybe we're getting nowhere because we're already there.
Glad You Asked
No consensus exists about when researchers need additional participant consent (reconsent) to submit existing data to the federal database of Genotypes and Phenotypes (dbGaP). Re-consent for submission of their data to dbGaP was sought from 1,340 study participants, 1,159 (86%) of whom agreed. We invited the first 400 of those who agreed to complete a telephone survey about their reasoning for their consent decision and their satisfaction with th…
Strategies of inclusion
US funding agencies have begun to institutionalize expectations that biomedical studies achieve defined thresholds for diversity among research participants, including in precision medicine research (PMR). In this paper, we examine how practices of recruitment have unfolded in the wake of these diversity mandates. We find that a very common approach to seeking diverse participants leverages understandings of spatial, geographic, and site diversit…
Ethical Considerations in the Use of Direct-to-Consumer Genetic Testing for Adopted Persons
The use of DTC genetic testing to identify health risks is increasingly popular. This is particularly the case for adopted persons, who often lack access to family health history information and who may see genetic testing as the best (and only) way to identify potential inherited disease risks. However, the development of genetic testing to fill gaps in family health history information for adopted persons has been hindered by several challenges…
Using Genetically Informed, Randomized Prevention Trials to Test Etiological Hypotheses About Child and Adolescent Drug Use and Psychopathology
In this essay, we describe a new era of public health research in which prevention science principles are combined with genomic science to produce gene × intervention (G×I) research. We note the roles of behavioral and molecular genetics in risk and protective mechanisms for drug use and psychopathology among children and adolescents, and the results of first-generation genetically informed prevention trials are reviewed. We also consider the nee…
Parent Perspectives on Pediatric Genetic Research and Implications for Genotype-Driven Research Recruitment
As genetic research is increasingly conducted in children, it is important to understand how parents make decisions about enrolling their children and what they think about receiving their children's genetic research results. We conducted semi-structured phone interviews with 23 parents of children enrolled in genetic studies of autism or diabetes. Qualitative thematic analysis focused on two important components of genetic research and genotype-…
Allocation of Resources to Communication of Research Result Summaries
Researchers and policymakers recommend communicating summary research results to biobank participants when feasible. To date, however, there have been few explorations of participant preferences for dedicating resources to this activity. Fifteen semi-structured interviews were conducted with participants of a genetic medicine biobank. Participants were interviewed by phone about their motivation for participation, and opinions about the allocatio…
Racing around, getting nowhere
Arguments about race recycle endlessly because the truths we think we're chasing are always chasing us. Maybe we're getting nowhere because we're already there.
Glad You Asked
No consensus exists about when researchers need additional participant consent (reconsent) to submit existing data to the federal database of Genotypes and Phenotypes (dbGaP). Re-consent for submission of their data to dbGaP was sought from 1,340 study participants, 1,159 (86%) of whom agreed. We invited the first 400 of those who agreed to complete a telephone survey about their reasoning for their consent decision and their satisfaction with th…
Parent Perspectives on Pediatric Genetic Research and Implications for Genotype-Driven Research Recruitment
As genetic research is increasingly conducted in children, it is important to understand how parents make decisions about enrolling their children and what they think about receiving their children's genetic research results. We conducted semi-structured phone interviews with 23 parents of children enrolled in genetic studies of autism or diabetes. Qualitative thematic analysis focused on two important components of genetic research and genotype-…
Using Genetically Informed, Randomized Prevention Trials to Test Etiological Hypotheses About Child and Adolescent Drug Use and Psychopathology
In this essay, we describe a new era of public health research in which prevention science principles are combined with genomic science to produce gene × intervention (G×I) research. We note the roles of behavioral and molecular genetics in risk and protective mechanisms for drug use and psychopathology among children and adolescents, and the results of first-generation genetically informed prevention trials are reviewed. We also consider the nee…
Awareness of Federal Regulatory Mechanisms Relevant to Community-Engaged Research
Few studies or investigators involved in community-engaged research or community-based participatory research have examined awareness and adoption of federal regulatory mechanisms. We conducted a survey of investigators affiliated with the 10 National Institutes of Health (NIH) Centers for Population Health and Health Disparities. A questionnaire designed to capture experience with the conduct and oversight of community-engaged research, and awar…
Rural Mexican-Americans’ perceptions of family health history, genetics, and disease risk
Genomics is failing on diversity
Engaging Study Participants in Research Dissemination at a Center for Population Health and Health Disparities
Focus groups informed PUEDO's dissemination strategy, which concentrates on study participants and the regional Latino community. This approach to dissemination should maximize information uptake and community benefit
Allocation of Resources to Communication of Research Result Summaries
Researchers and policymakers recommend communicating summary research results to biobank participants when feasible. To date, however, there have been few explorations of participant preferences for dedicating resources to this activity. Fifteen semi-structured interviews were conducted with participants of a genetic medicine biobank. Participants were interviewed by phone about their motivation for participation, and opinions about the allocatio…
It would be so much easier”
Assess the feasibility and acceptability of health system-led genetic risk notification in a US integrated health system. We conducted semi-structured phone interviews with individuals age 40-64 years who had undergone genetic sequencing, but had not yet received their results, assessing attitudes to direct outreach to relatives. During each interview, we collected contact information for adult relatives identified as members of the same system a…
Ethical Considerations in the Use of Direct-to-Consumer Genetic Testing for Adopted Persons
The use of DTC genetic testing to identify health risks is increasingly popular. This is particularly the case for adopted persons, who often lack access to family health history information and who may see genetic testing as the best (and only) way to identify potential inherited disease risks. However, the development of genetic testing to fill gaps in family health history information for adopted persons has been hindered by several challenges…
Stakeholder Perspectives on Returning Nonactionable Apolipoprotein L1 (Apol1) Genetic Results to African American Research Participants
Conclusions: APOL1 results should be offered to participants. Responsibly fulfilling this offer requires careful identification of best communication practices, broader education about the topic, and ongoing community engagement
Strategies of inclusion
US funding agencies have begun to institutionalize expectations that biomedical studies achieve defined thresholds for diversity among research participants, including in precision medicine research (PMR). In this paper, we examine how practices of recruitment have unfolded in the wake of these diversity mandates. We find that a very common approach to seeking diverse participants leverages understandings of spatial, geographic, and site diversit…
A conjunctural analysis of the origins of ‘embedded Elsi’ in U.S. genomic medicine
Calls to identify, explore, and address ethical and social issues as part of the design and implementation of scientific research are now widespread. One way of doing so is through an embedded approach, where ethical, legal, and social implications (ELSI) researchers are situated within larger scientific research studies. We trace the emergence of the ‘embedded ELSI’ approach to integration alongside the development of genomic medicine. In partic…
Ethics in Clinical Research (10 works) · Medicine (10 works) · BRCA gene mutations in cancer (8 works) · Political science (8 works) · Psychology (7 works) · Biology (6 works) · Public relations (6 works) · Public health (5 works) · Sociology (5 works) · Nursing (4 works)