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GenEthics

 
Goal

  Charmaine Royal,  Ph.D.,
  Director

With the ever-increasing demand for more deliberate attention to the non-scientific impacts of human genome/genetics research, particularly for diverse, underrepresented, and traditionally marginalized groups, the GenEthics unit is charged with the tremendous challenge of assessing and addressing relevant ethical, legal, social, and psychosocial issues emerging from the genomic revolution.  It has become more and more evident that without adequate and appropriate integration of various contexts (i.e. historical, social, political, cultural, and economic effects), efforts (including human genome research) to eliminate existing health disparities and promote health will be futile.  Accordingly, this unit seeks to incorporate the unique as well as the shared experiences of African Americans and other African Diaspora populations into the implementation and application of human genome research, endeavoring to minimize potential harm and maximize capacity of these groups to partake of the expected benefits of improved diagnosis, treatment, and prevention of disease.  An equally important anticipated outcome is enhanced overall well-being of these populations and humanity as a whole, facilitated by greater appreciation for the genotypic, phenotypic, and cultural diversity that is inherently characteristic of humankind.

To optimize participation of African Americans and other African Diaspora populations in the generation, interpretation, application, and utilization of human genetics/genome information.

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Operational Objectives  

The overriding theme/approach for the GenEthics unit is “community partnership”.  As embodied in the GenEthics logo, engagement of and partnership with the communities served by the NHGC are integral to the functioning of each of the three sections of the unit (Research, Education, and Policy) and the Center as a whole.  The following operational objectives of the GenEthics Unit serve to guide its research, education, and policy activities.

1.    Design and implement research projects that identify and examine the ethical, legal, societal, and psychosocial implications of human genetics/genome research for peoples of the African Diaspora. 

2.    Develop culturally appropriate educational materials/curricula/programs related to the biological, ethical, legal, and social aspects of human genome research, for both the professional and public sectors of the local and international constituencies of the NHGC.

3.    Facilitate the development of local and international public policies that promote equity, among individuals and communities, in the distribution of benefits and risks associated with human genome research.

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Community Partnership Program   

The Community Partnership Program (CPP) is the pulse of the Unit and Center, facilitating the relationship between those entities and the communities which are the foci of their efforts.  The CPP has been implemented to establish and maintain rapport with key community leaders and organizations in an effort to partner with them and their constituents in the undertakings of the NHGC.  The following are some of the CPP activities.

·              What is the CPP?

·              Community Engagement

·              Benefits of Community Engagement

·              Community Partners

·              The Community Advisory Board (CAB)

·              Issues Raised during Community Forums

·              Reflections from Community Forums

·              Information for a presentation on genetic research

·              Contact Information

Go to Community Partnership Program Page

Go to Activities Details

Research

The establishment of a rigorous GenEthics research program at the NHGC is paramount to the accomplishment of our goal, and to the overall goal of the NHGC.  The GenEthics research is intended to complement molecular and epidemiological research projects being conducted in other NHGC units, as well as venture into other areas.  There are several ongoing research projects in GenEthics including:

Center for Excellence in ELSI Research (CEER)

Attitudes of African Americans Toward Genetic Testing for Prostate Cancer Risk

Risk Evaluation and Education for Alzheimer’s Disease (REVEAL II)

Attitudes toward DNA Testing for African Ancestry 

Engaging African Communities in the HapMap Project

Local community surveys 

 Go to Research Details

Education

It is becoming increasingly clear that the full potential of the rapid advances in human genetics will not be realized unless each segment of society becomes “genetically literate”. As such, and in accordance with the stated mission of the NHGC, “To. . . . . teach the knowledge about DNA sequence variation and environment interaction . . . . .” , education is one of our most critical responsibilities.  As indicated below, the education program targets various groups, including students, faculty, and the general public.

Graduate Course [“Ethical, Legal, and Social Issues (ELSI) in Human Genetics”]

Expanding ELSI Pedagogy in Undergraduate Education (Faculty Summer Institute)  

Local Community Partnership Program (CPP) activities 

Jackson Heart Study(JHS)

 Go to Education Details

Policy

A core purpose of the NHGC is for diverse groups, particularly populations of the African Diaspora, to have a role in informing local and international policies regarding research, healthcare, and society, particularly as they relate to human genetics.  Active involvement in the process is the most effective and practical means by which members of these populations may partake of the anticipated benefits, and be spared from many of the potential harms from advances in genetics/genomics.  Some of our policy-related projects include:

Developing the Five-year Policy Agenda for the NHGC 

Human Genome Variation and “Race” Series

Partnership with the Michigan Center for Genomics and Public Health (MCGPH)

and the Joint Center for Political and Economic Studies (Joint Center)

Go to Policy Detail

activities Details

Community Partnership Program  

Please click above link for more information on the CPP.

 Research

The establishment of a rigorous GenEthics research program at the NHGC is paramount to the accomplishment of our goal, and to the overall goal of the NHGC.  The GenEthics research is intended to complement molecular and epidemiological research projects being conducted in other NHGC units, as well as venture into other areas.  There are several ongoing research projects in GenEthics including:

Center for Excellence in ELSI Research (CEER)

Dr. Royal has recently received funding from the National Human Genome Research Institute to plan for the establishment of a Center for Excellence in ELSI Research (CEER) at Howard University.  Additional information on the proposed “Center on Genomics and Social Identity in the African Diaspora” is forthcoming. 

Please visit our web site click on http://www.howard.edu/cee

Perry W. Payne, Jr., MD, JD, MPP

 

Research Associate/Project Manager

 

ppayne@genomecenter.howard.edu

 

(202) 806-4434

 

 

Attitudes of African Americans Toward Genetic Testing for Prostate Cancer Risk

This project is an outgrowth of the African American Hereditary Prostate Cancer (AAHPC) Study, one of the two initial core projects of the NHGC.   It is an effort to delineate factors associated with the willingness of individuals to participate in genetic testing for prostate cancer.   The study builds on the scientific infrastructure of the African American Hereditary Prostate Cancer (AAHPC) Study (a national collaborative project aimed at identifying genes involved in prostate cancer in African American men) in an effort to increase understanding of the psychosocial, cultural, and ethical dimensions of prospective genetic testing for prostate cancer risk, as well as to learn about participants’ experiences in the AAHPC study.  This study employs both quantitative (electronic survey) and qualitative (in-depth interviews) research methods, intended to not only identify attitudes, but also provide some insight into their determinants.

The primary Specific Aims of this study are to: 1) assess the relationship of personal, socio-economic, and religious factors to attitudes toward genetic testing for prostate cancer risk and 2) determine factors influencing likelihood of uptake of genetic testing for prostate cancer risk.  The study group consists of AAHPC Study participants (and persons who declined participation) from three of the seven sites in the AAHPC Study – Washington, DC, and Atlanta, GA, and New York, NY.  Both quantitative and qualitative research methodologies are being employed in this investigation.  Data is ascertained through a web-based survey and an interview guide administered via telephone and in person, respectively. 

The primary goal is to assess the attitudes and interest of members of families participating in the AAHPC Study regarding genetic testing for prostate cancer risk.  A secondary goal is to assess their perspectives on the AAHPC study and their experiences with that study. 

Crystal M. Glover, MS

Nicole A. Moss

Project Coordinator

Study Coordinator

cglover@genomecenter.howard.edu

nmoss@genomecenter.howard.edu

(202) 865-0006

(202) 865-0009

 

Risk Evaluation and Education for Alzheimer’s Disease (REVEAL II)

Genes and other biological markers are rapidly being identified that can provide susceptibility risk estimates for the eventual development of complex late onset diseases. There is some public interest in obtaining this risk information, however given inadequate methods of prevention for many complex diseases, there are ethical concerns about introducing such genetic testing in a clinical setting. There is also limited information on the benefits or negative consequences of providing susceptibility risk information that could guide rational decisions or public policy.  Therefore, the Risk Evaluation and Education for Alzheimer’s Disease (REVEAL II) Study seeks to develop new guidelines for whether and how to best use susceptibility testing for unpreventable, late onset disorders.

REVEAL II is a collaborative project coordinated by Boston University and includes Case Western Reserve University, Columbia University, and Howard University.  The primary aim of the REVEAL II Study is to examine whether receiving risk assessment and APOE genotyping disclosure through a Condensed Education and Counseling Protocol is as safe and as effective as receiving such information through an Extended Protocol. Another specific aim is to study whether there are any differences among groups who receive disclosure of APOE results and risk assessment with different provider types. In the context of the Condensed Education and Counseling Protocol we will also examine differences between a physician providing disclosure and a genetic counselor providing disclosure.  REVEAL Study participants are followed for one year to assess the potential development of anxiety or depression, and to track any decisions to alter employment, insurance coverage, or health behaviors.

In REVEAL II, newly published data on genetic risk of AD in African American families will allow more specific characterizations of risk estimates for both African Americans and European Americans. Given that African Americans are typically underrepresented in genetic testing research protocols, one of Howard University’s major goals is to increase the enrollment of African Americans into the REVEAL II Study.  We expect that at least one-third of the participants in REVEAL II will be African American, allowing us to explore our final aim of how racial identity affects the desire to obtain genetic risk assessment and the impact of receiving it.  The inclusion of viewpoints from participants with diverse backgrounds will serve to inform responsible delivery of susceptibility genetic testing services to various populations. 

To learn more about the REVEAL II Study procedures and eligibility requirements, please contact the Howard University study coordinator or visit the main site for REVEAL II.

Grace-Ann Fasaye, ScM, CGC

Zebalda Bamji

Genetic Counselor

Research Assistant

gfasaye@genomecenter.howard.edu

zbamji@genomecenter.howard.edu

(202) 865-0008

(202) 865-0010

 

Attitudes toward DNA Testing for African Ancestry

This collaborative study with African Ancestry, Inc. seeks to determine ethical and psychosocial dimensions of genetic testing for ancestry among African Americans.  Participants include members of the general population that may or may not be interested in DNA testing as well as persons requesting such testing.  The latter group of participants completes one survey prior to genetic testing (pre-test) and another upon receipt of their test results (post-test), while general population participants complete a single survey.  The surveys comprise both fixed choice and open-ended items.

Engaging African Communities in the HapMap Project

The NHGC is participating in the International Human Haplotype Map (HapMap) Project, aimed at characterizing patterns of common variation across various populations or geographic regions as a means of developing a more efficient tool (haplotype map) for mapping genes underlying susceptibility to common disease.  The overall project includes the engagement of a number of communities/populations around the world, collection of samples from members of these populations, genotyping of the samples, and analysis of the resulting data.  The NHGC has been leading the effort to engage communities in west (Nigeria), east (Kenya), and southern Africa (South Africa) and to obtain appropriate approval and consent for participation in the HapMap Project.  Community engagement involves several activities such as surveys, town meetings, focus groups, and in-depth interviews which combine to create a process for considering the risks, benefits, and relevance of the development of a haplotype map of the human genome.  Community engagement and sample collection are proceeding at the sites. 

Local community surveys

Surveys are being conducted with attendees at the above-mentioned local community forums as well as other community members to assess knowledge/awareness of genetics and attitudes toward various aspects of genetic research and practice. 

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Education

It is becoming increasingly clear that the full potential of the rapid advances in human genetics will not be realized unless each segment of society becomes “genetically literate”. As such, and in accordance with the stated mission of the NHGC, “To. . . . . teach the knowledge about DNA sequence variation and environment interaction . . . . .” , education is one of our most critical responsibilities.  As indicated below, the education program targets various groups, including students, faculty, and the general public.

 Graduate Course [“Ethical, Legal, and Social Issues (ELSI) in Human Genetics”]

In Fall 2002, Dr. Royal initiated this interdisciplinary ELSI course (offered through the Graduate School) to engage students in an integrated analysis of the ethical, legal, and social implications (ELSI) of human genetics/genome research and practice.  The course is a requirement for all students in the Department of Genetics and Human Genetics, and is available as an elective for graduate and upper level undergraduate students in all other departments/schools such as Biology, Philosophy, Psychology, Sociology, Divinity, Law, and Political Science.  This is a three credit hour advanced course, offered each Fall semester, with no specific prerequisite course.  The format of the course is a combination of lectures by Howard University faculty and invited guests, short films, case studies, student presentations, practicum, and other forms of pedagogy. 

Expanding ELSI Pedagogy in Undergraduate Education (Faculty Summer Institute)

This project is a collaboration between Dartmouth College and Howard University to train university/college faculty to teach ELSI issues to undergraduates.  For the past two summers, faculty from various institutions across the country have been selected to participate in a week-long Faculty Summer Institute (FSI) at Dartmouth or Howard, where faculty from both institutions, along with invited faculty, conduct the training sessions.  It is expected that the FSI participants will return to their institutions to develop ELSI courses for undergraduates.  

Local Community Partnership Program (CPP) activities

The CPP has created avenues for bi-directional education between the scientific and general communities.  While the faculty and staff of the NHGC have been instrumental in informing community groups and members about genetics/genomics and ELSI issues, the community has been quite effective in enlightening the NHGC about its concerns, fears, hopes, and expectations.  Our community-based activities as well as our research have also been informative for educational materials that are currently being developed.  It is anticipated that the planned ongoing community engagement will provide even more opportunity for both formal and informal education of all parties involved. 

Jackson Heart Study(JHS)

The NHGC is a collaborator on the JHS, based in Jackson, MS to provide expertise on and assistance with the genetics component of the study.  In addition to our involvement in the molecular genetics and genetic epidemiology aspects of the project, we have participated in the development of the genetics education program which includes community forums; brochure development; staff training; faculty workshops and seminars; healthcare provider seminars and conferences; and undergraduate training.

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Policy

A core purpose of the NHGC is for diverse groups, particularly populations of the African Diaspora, to have a role in informing local and international policies regarding research, healthcare, and society, particularly as they relate to human genetics.  Active involvement in the process is the most effective and practical means by which members of these populations may partake of the anticipated benefits, and be spared from many of the potential harms from advances in genetics/genomics.  Some of our policy-related projects include: 

Developing the Five-year Policy Agenda for the NHGC

This grant from the Harris Foundation has been instrumental in jump-starting the policy arm of the GenEthics Unit.  The funding facilitated an assessment of current genetics policy to help identify gaps and potential areas of focus for the NHGC.  In line with the mission and activities of the NHGC, one of the major emerging areas for policy development through the NHGC is, ‘race, genetics, and health’. 

Human Genome Variation and “Race” Series

In May 2003, the NHGC convened the first in a series of think tank sessions on the conceptualization of genetic variation as race.  The inaugural meeting entitled, Human Genome Variation and “Race”: The State of the Science, brought some of the world’s leading genome scientists in the area of population genetics to Howard for a one day meeting on the subject.  Other meetings in the series will focus on the clinical, social and psychosocial, legal, and related policy implications. Funding for the “State of the Science” meeting was provided in part by The Harris Foundation and the Office of Science of the Department of Energy.

It was important to the NHGC faculty that the information presented at the “State of the Science” meeting be published in a credible scientific journal with wide distribution and a substantial readership.  Nature Genetics (NG), a publication of the Nature Publishing Group (NPG), has agreed to publish in a special peer-reviewed edition, selected updated perspectives and commentaries based on the presentations made at this meeting.  The November 1 Nature Genetics Special Issue will be released to coincide with the American Society of Human Genetics (ASHG) Meeting in Toronto on October 26-30.  This project has been supported in part by the Office of Science of the Department of Energy and the National Human Genome Research Institute.

Partnership with the Michigan Center for Genomics and Public Health (MCGPH) and the Joint Center for Political and Economic Studies (Joint Center)

Faculty at the NHGC have had a long and trusted relationship with Mr. Toby Citrin, Director of the MCGPH at the University of Michigan and Principal Investigator of the “Communities of Color and Genetics Policy” project.  As a forerunner in the engagement of community members in genetics policy development, Mr. Citrin has been an invaluable resource in assisting us in designing an effective public policy program.  He completed a mini-sabbatical last year at Howard during which time he facilitated a relationship between the NHGC and the Joint Center for Political and Economic Studies.  The Joint Center, based in Washington, DC, “is an international, nonprofit institution that conducts research on public policy issues of special concern to black Americans and other minorities.”  The Joint Center works with a number of policy makers, coalitions, advocacy organizations, and media in carrying out its mission.  Among these are the Congressional Black Caucus, National Conference of State Legislatures, National Governor’s Association, National Association for the Advancement of Colored People, and the National Urban League.  We have initiated collaborations with the Joint Center and will continue our work with them, the MCGPH, and include other entities as necessary to fully develop the policy program.

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