Howard University National human Genome Center
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GenEthics

 

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.

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.

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:

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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