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Plan for Increasing the Number of Underrepresented Minorities1 Trained in Genomics and ELSI2 Research
SECTION I - ACTION PLANThe National Human Genome Research Institute (NHGRI) is committed to increasing the number of individuals from underrepresented minority groups who have the training to pursue careers in genome and ethical, legal and social implications (ELSI) research. Genome research offers tremendous challenges and opportunities for improving human health and ELSI research offers the chance to explore some of the most profound ethical, legal and social issues of our time. NHGRI wants the best minds to participate in this work. There are extraordinary career opportunities in genome and ELSI research that all should share in. The very nature of genome and ELSI research demands the inclusion of a diversity of points of view and scientific interests. One of the major emphases of this research will be to investigate how DNA sequence variation affects phenotypic differences, especially differences in susceptibility to disease among various groups. The significant societal ramifications of this research will also need to be addressed. It is clearly desirable to have individuals involved who bring diverse perspectives to this research, including an interest in understanding diseases that disproportionately affect some populations. Genome research will affect all populations and thus all groups need to participate in setting the research agenda and examining the broader issues raised by it. Unfortunately, despite a number of ongoing training and recruitment activities, NHGRI has had limited success in attracting underrepresented minorities into genomics and ELSI research to date. To begin the process of addressing this issue, on April 16-17, 2001, the NHGRI convened a meeting to explore new and innovative ideas and models for increasing the number of underrepresented minorities pursuing research careers in genomics and related sciences. Invitees included individuals from universities and organizations that have a long history of successfully training underrepresented minorities in research. After a sustained and dynamic discussion of the issues, the meeting participants suggested a number of principles and activities that have been proven effective and that NHGRI should consider as it moves forward in this area. A summary of this meeting is provided as SECTION II of this document and provides useful background to the initiatives outlined below. GOALTo increase the number of underrepresented minorities that are trained to pursue research in the fields of genomics and/or ELSI research. PRINCIPLESThe following principles have been used to focus on those actions that have the greatest likelihood of leading to the ultimate goal and that are within the scope of the NHGRI mission:
PLANBased on the information and suggestions gathered at the workshop on minority training held April 16-17, 2001, (see SECTION II of this document) NHGRI proposes to take the following actions towards achieving the overall goal. These actions are not in priority order, but are viewed as an initial package to be implemented simultaneously. It is anticipated that additional activities will be added in the future. The activities are grouped by the organizational entity that will have responsibility for implementing them.
A. Office of Policy and Public Affairs (OPPA)This office will handle many of the outreach and public education efforts for this initiative. A Minority Outreach Team has been created to coordinate outreach activities across the institute. This office will handle many of the outreach and public education efforts for this initiative. A Minority Outreach Team has been created to coordinate outreach activities across the institute. 1. Minority ConferencesNHGRI will establish a presence at conferences targeted toward minorities (e.g. Society for Advancement of Chicanos and Native Americans in Science National Conference, Annual Biomedical Research Conference for Minority Students) by hosting a visible and active exhibit booth; organizing genomics symposia; compiling an attractive brochure that highlights opportunities for minority students in genomics; and hosting roundtables or hospitality suites so that students have a chance to talk with staff from NHGRI. NHGRI will actively seek out opportunities to give presentations to groups such as Zeta Phi Beta, the National Association of Hispanic Nurses, the Association of American Indian Physicians, the Intercultural Cancer Coalition, and other organizations serving the communities appropriate for ELSI research. NHGRI will participate in at least three conferences per year aimed at minority or underrepresented communities. 2. K-12 education--"Exploring our Molecular Selves" Educational KitAn educational kit -"Exploring our Molecular Selves" - has been produced by this office in connection with the publication of the initial working draft sequence of the human genome. The kit has been widely distributed and enthusiastically received. Staff will actively inform teachers and administrators at schools with significant minority enrollment about the availability of the kit. Staff will also evaluate distribution, use and value of the kit in schools with significant minority enrollment and assess means of better reaching these schools and developing additional materials to address their specific needs. As an extension of the educational kit, NHGRI will broadcast a program on genomics and genetics for high school classrooms in the fall of 2001. We will ensure that schools with significant minority enrollment are reached by this event. 3. Genome Minority Outreach Video for Inclusive Education (Genome MOVIE)NHGRI is creating a short video to communicate the excitement and opportunities in genomic research to underrepresented minorities. The goals of this video are to aid in the recruitment of individuals from historically underrepresented communities to become active participants in genomics and genetics at all levels, reflect the diversity of the target audience, provide compelling role models, and serve as a resource for anyone providing outreach and education to minority and underrepresented communities. This video will be produced within two years. 4. NHGRI Consumer DayNHGRI will make every effort to dramatically increase minority participation in the NHGRI annual consumer day conference. Minority institutions and organizations will actively be sought as partners in the planning process to develop a program that will attract minority participation. For the Fall 2001 consumer day conference, NHGRI will partner with minority organizations and institutions in the DC area with a goal of developing a program that can be replicated across the country, ideally by NHGRI grantees in partnership with their local minority institutions and organizations. 5. One-Stop Web PageThe NHGRI Minority Outreach Team is creating a one-stop Web page by collecting and developing resources relevant to minority outreach, education and training on a single web page with appropriate links to other resources. The Web page will be public within one year and will have links to Web pages at the various training sites supported by NHGRI. 6. Minority OrganizationsOPPA staff will build relationships with leaders from minority organizations focused on health issues to get their advice on other opportunities for outreach. 7. ArticlesNHGRI will write or contract for the writing of articles targeted to minority publications (e.g., SACNAS News). The goal is to have at least two articles published per year, each of which can potentially appear in multiple places.
B. Division of Extramural Research (DER)The grants programs in the DER fund some of the most innovative and forward-looking work in genomics and ELSI research. Many of these research projects can provide excellent opportunities for students to become acquainted with this new field and to receive formal training in it. DER staff will pursue a number of approaches to enable interested students and faculty to benefit from these opportunities. Staff recognizes that this is a shared responsibility between staff and grantees and will work with the grantees to develop effective programs. For example, they will provide information on approaches that have proven effective and suggest experienced individuals who can provide advice. Where possible, development of partnerships between centers of genome research and minority serving institutions will be encouraged. Additional funding for minority activities, including salary for a minority training coordinator at large centers, will be made available in the form of minority supplements or other mechanisms as appropriate. Discussions with grantees will begin immediately after the meeting of the National Advisory Council for Human Genome Research (NACHGR), followed by a workshop for grantees in early fall to discuss recruitment and training strategies and how they can best be implemented. It is anticipated that this workshop will be conducted on an annual or biennial basis to encourage collaborations and sharing of information on successful and unsuccessful approaches. Grantees will be expected to make information on their minority training activities available on their Web sites as part of their outreach efforts. The following is an initial list of activities that will be added to over time. 1. Training GrantsTraining grant directors will be asked to make training of minorities a high priority in their programs and their success in enrolling minority trainees will be a criterion for continued funding. NHGRI expects to achieve an average of 10 percent of trainees on board from minority populations within the next three years. Eventually, the percentage should rise to the percentage of minorities in the baccalaureate population. 2. Centers of Excellence in Genomic Science (CEGS)These new centers will be a centerpiece of NHGRI supported research in the future and will have training of new investigators as an essential component. They are therefore ideal sites for the training of individuals from underrepresented minorities as well. Each CEGS will be asked to propose what specific training activities they will implement and how they will recruit the relevant trainees. Staff will encourage the CEGS as a group to generate a range of training opportunities focused on underrepresented minorities. The requirement for this training component will be made explicit in the revised program announcement to be issued this summer. The centers will be expected to have an average of 10 percent of their trainees from underrepresented minority populations. In addition, each center will be expected to have an outreach activity such as a summer program for undergraduates or a course for students or faculty from underrepresented groups by the second year of the grant. 3. Production CentersThe existing NHGRI production centers hire a large number of minorities for their production work. Some of these individuals become interested in science careers. Staff will gather information on what these centers are currently doing to encourage and guide such individuals in their research careers and will ask them to propose and implement programs to enhance these activities. For example, they could establish a scholarship program to enhance the careers of staff interested in pursuing graduate degrees. The centers will also be asked to develop and implement other creative ideas for attracting and training minority individuals. Within two years, each center will be expected to have a program in place. 4. ELSIThe ELSI Research Advisors recommended several approaches to increasing the participation of minorities in ELSI research at their meeting, June 4-5, 2001. These include: research opportunities in ELSI for undergraduates to encourage them to think of careers in this field; pre-doctoral fellowships and dissertation fellowships for students in the social sciences and humanities who are interested in ELSI training; career awards for faculty to free up time for research in ELSI; and outreach to established minority scholars who are already engaged in research but who may not be aware of ELSI research opportunities. The ELSI program funds a number of grants specifically investigating the ELSI issues arising from research on genetic variation. These grantees met on May 30-31, 2001 and discussed the opportunities for minority participation and training on their grants. As a result, several requests for minority supplements are expected. Staff will also encourage other ELSI grantees to consider this and other options for increased minority participation. Over the next year, NHGRI will issue a call for supplements to MARC grants to extend the program to the social sciences and humanities and include an ELSI research experience. NHGRI will also issue solicitations for pre-doctoral fellowships and career awards within one year. In addition, the ELSI program will organize five technical assistance workshops in the coming year for minority communities on how to write successful ELSI grant applications and will provide assistance to investigators through the application process. 5. Other NHGRI GrantsThe NHGRI director will send a letter to all principal investigators (PI) of relevant grants asking them to make it a priority to include training of minorities in their activities. As new grants are awarded, those PIs will also receive this letter. The letter will include the NHGRI plan for increasing the number of underrepresented minorities trained in genomics and ELSI research and will remind grantees about the availability of minority supplements. All principal investigators who receive minority supplements will be asked to report on their activities in this area as part of their annual progress report. Staff will also examine the portfolio of larger grants that are not centers to look for additional opportunities for developing training activities appropriate to their research goals. As a result of these efforts, NHGRI expects to double the number of minority supplements awarded over the next two years. 6. Partnering with Other OrganizationsPartnering with NIGMS: Partnering with Professional Societies, Foundations, Industry: NHGRI will explore other opportunities for partnering with foundations or industry. Other partnerships:
C. Division of Intramural ResearchThe intramural Training and Career Development Office (TCD) within the Office of the Scientific Director is charged with enhancing the training experience of pre- and post-doctoral fellows by serving as a resource for training and career development. One of the five primary areas of focus in the office is Minority Recruitment, which includes outreach, training and collaboration. 1. OutreachTCD staff will continue to carry out outreach activities aimed at minorities such as presenting and exhibiting at scientific meetings, hosting tours of the intramural laboratories, identifying collaborative opportunities, and mentoring minority faculty and students. This outreach will be coordinated with related activities within OPPA and DER through the Minority Outreach Team. 2. TrainingThe annual NHGRI Summer Workshop in Genomics for Faculty at Minority Institutions is designed to update faculty from institutions with substantial minority enrollment on the latest developments in genetic technology, medical genetics, gene therapy and ethics. The course also assists attendees in incorporating this information into classroom teaching to cultivate minority student interest in genome research, and offers information on careers in genetics and grant writing skills. Participants visit NHGRI laboratories and experience first-hand the latest technologies and research. In 2000, 27 faculty members participated in the program. Over the next year, the impact of this training on the home institution of the participants will be evaluated and adjustments made in the course, depending on the outcome of this evaluation. 3. CollaborationThe NHGRI intramural program is actively involved in three scientific collaborations involving minorities and minority serving institutions, the Africa America Type II diabetes study and the African-American hereditary prostate cancer study with Howard University, and the Attention Deficit Hyperactivity Disorder study in a Hispanic population with Hispanic investigators. All three of these collaborations are providing excellent training opportunities for a number of minority investigators. The collaborations with Howard University have been so successful that they have been the impetus for the establishment of the National Human Genome Center at Howard [founders.howard.edu]. 4. Other ActivitiesIn addition to these ongoing activities, the TCD office will continually look for new and creative ways to increase the representation of minorities in genomic and genetic research. The office serves as a liaison with other National Institutes of Health (NIH) program directors to assist minority fellows in taking advantage of programs that they may be eligible for (i.e. the NIH loan repayment program, the Undergraduate Scholarship program, the NIH academy). The office will work to identify and eliminate any obstacles that could impede a minority fellow's ability to participate in the intramural program. The TCD staff is also working to develop new initiatives such as the joint summer student program with the National Human Genome Center at Howard University, which is expected to start in the near future. The goal is to support 10 students per year under this program. Starting next fiscal year, the staff hopes to launch a Health Disparities Research Award. The goals of this award will be to increase the number of projects focusing on health disparities; to increase the number of minority, post-doctoral fellows and students conducting research in the intramural program; and to encourage interdisciplinary collaborations. Supplementary funding will be offered to investigators who wish to expand their research programs in this area. A total of one to two supplements per year are planned.
D. EvaluationAll components of this initiative will be reviewed and evaluated to assure that they achieve the goals that are set for them. Staff will report to council annually on the status of the initiative. Special emphasis will be placed on tracking the individuals who participate in the training activities that are offered, both extramurally and intramurally. To this end, center grants and training grants as well as other grants that receive minority supplements will be asked to identify measurable goals for their minority training activities. They will be asked to provide information on how they are achieving these goals as part of their progress reports each year. They will also be required to track the individuals they are training as they progress through their training and career paths. This information will be collected and evaluated by NHGRI staff on an annual basis. In the first year, NHGRI will obtain information from its grantees to establish a baseline for the participation of minorities in its programs. Baseline data will also be collected in the intramural program. This baseline will then be used to establish appropriate goals for future years so that minority participation in NHGRI programs increases steadily. In addition, an overall evaluation of the whole initiative will be conducted after five years to assess progress towards the ultimate NHGRI goal. A group of advisors will be recruited to assist with this evaluation. The results of this evaluation will be brought to Council for advice on adjustments that need to be made and future directions that the initiative should take.
SECTION II - WORKSHOP SUMMARYIdentifying New Paradigms
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In order to understand the issues related to minority interest in research careers, several invitees were asked to describe factors contributing to low or high participation in research. The factors that contributed to high participation were:
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The participants described a variety of programs that have been successful in recruiting and graduating minority students. Generic descriptions are given below.
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The institute must be bold in developing its vision for incorporating diversity into its programs, and the leadership and staff in the intramural and extramural programs must champion these programs.
1. Foster Research Training
2. Foster Research
3. Create Partnerships
Partnerships can be used to leverage resources and accomplish the goals of both groups. Some examples of possible partnerships are:
4. Increase Outreach Activities
The HGP needs to be explained to a variety of communities, such as students, non-biology scientists, special populations, general public, etc. These messages can be delivered in a variety of media and ways, such as:
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1Defined in this document as African Americans, Hispanic Americans, Native Americans (including Alaska Natives) and natives of the Pacific Islands. Throughout this document, the term "minority" means "underrepresented minority".
2 Ethical, legal and social implications of genetics research.
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Last Updated: December 4, 2008
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