Genetics and the Latino Community: A Delphi Study

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Genetics and the Latino Community A Delphi
Study

• Nancy L. Atkinson, PhD
• Kipling Gallion, MA
• Robert S. Gold, PhD, DrPH
• Amelie Ramirez, PhD
• Patricia Chalela, MPH

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Problem Statement

• The public is generally unaware of, or at best
  wary of, genetics genetics research.
• Hispanic/Latino citizens need to
• Know more about genetics issues
• Participate in clinical genetic research
• Benefit from advances in genetics health care
  services
• Community consultations needed to involve the
  Hispanic/Latino community in the solution.

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Diversity of the Latino Population

• Historic origins,
• Current geographical location,
• Degree of education, acculturation, and
  bilingualism
• These are some of the many factors which
  subdivide this group.

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Diversity

• Latinos have much more in common in their
  cultural and linguistic backgrounds than in their
  genetic pool.

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LGCCN Delphi Study

• Conducted to build consensus on a number of
  issues relative to
• Genetics education outreach
• Health services
• Research participation
• Capacity to conduct genetics research
• Built on issues identified in literature review
  and in-depth interviews.
• Serve as the basis for community consultation

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Delphi Questions

• Important barriers
• To genetics education and outreach among
  Hispanic/Latino populations
• Deterring Latinos from participating in genetics
  research
• Deterring Latinos from using health care services
  for genetic-based diseases
• Deterring Latinos from developing the capacity to
  conduct research in genetics issues

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Delphi Process and Respondents
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Why Rate Importance Changeability?
Not A Priority
Changeability
High Medium Low
Focus Efforts
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Why Rate Importance Changeability?
Not A Priority
Research Needs
Changeability
High Medium Low
Focus Efforts
Early Success
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Delphi Questions
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Response By Group
Not mutually exclusive.
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General Barriers (High Importance Low
Changeability)

• Low education levels
• Low socioeconomic status
• Issue is irrelevant compared to other more basic
  needs
• Poor access to health care in general
• Lack of health insurance

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Education and Outreach

• I'm disappointed by the disinformation that is
  given when the translation was not done by
  someone that not only understands the language,
  but also the culture.

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Education and Outreach

• An effort must be made in order to consider
  culture and language not as barriers.

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Barriers to Genetics Education and Outreach (High
Importance Changeability)

• Lack of information communicating the benefits of
  genetic research in a meaningful way to Latinos.
• Lack of appropriate outreach education programs
  (bilingual, bicultural, culturally appropriate)
• Lack of understandable bilingual/bicultural
  educational materials and information about
  genetics.
• Inappropriate materials (dull, high literacy, too
  abstract)
• Lack of outreach to Latino community leaders
• Lack of access to information among health care
  professionals serving the Latino community

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Genetics Research

• Latinos have been studied and surveyed for so
  many years, and their life situations have not
  improved significantly.

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Genetics Research

• The isolated researcher who does science in an
  ivory tower will not succeed in the barrio.

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Barriers to Participation in Genetics Research
(High Importance Changeability)

• Lack of culturally sensitive research
• Lack of awareness about the benefits and risks of
  participating in research, including benefit to
  Latino community
• Lack of researchers partnerships and trust
  building with CBOs
• Lack of awareness of opportunities to participate
  in research
• Lack of information about genetics research
• Lack of encouragement to participate in clinical
  trials

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Health Care Services

• I think they should be involved in research, as
  involved as any other population
• They should also accrue the benefits associated
  with genetics research as equally as other
  groups.

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Health Care Services

• We often dont have enough Hispanic genetic
  providers that would understand the culture, the
  language, the nuances as to how to address the
  Latino community in health care services.

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Barriers to Use of Genetics Health Services (High
Importance Changeability)

• Lack of awareness
• Lack of knowledge about what services are
  available (until one needs them)
• Lack of culturally relevant outreach

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• The Latino community needs to participate as
  both providers and researchers, as well as policy
  makers, as well as participants in actual
  studies.

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Barriers to Genetics Research Capacity (High
Importance Changeability)

• Lack of personal recruitment strategies for
  Latino health professionals
• Lack of systematic attempts to recruit Hispanics
  into the sciences

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Recommendations

• Educate Latinos about
• The link between genetic factors and disease
• The potential benefits of the genetics field and
  related research
• Risk reduction and prevention in relation to
  genetic predisposition
• Use full assault of TV, web, music, etc., to
  raise awareness
• Use neutral Spanish in communication efforts that
  all can understand
• Introduce to community at large through Spanish
  and English media health promotion

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Recommendations

• Include broad, diverse community participation in
  the consultation
• Inform health care providers who have contact
  with Latino patients
• Involve genetics professionals, leaders,
  organizations, science teachers, churches,
  spiritual leaders, and survivors of genetic
  diseases
• Conduct baseline assessment of epidemiology,
  culture, knowledge, and awareness that allows
  comparison across regions
• Provide research funding to study diseases more
  prevalent in Latino subgroups
• Conduct interdisciplinary research

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Recommendations

• Recognize and attend to cultural issues
• Always consider the diversity of the Latino
  community in SES and language
• Always consider where genetics fits into
  day-to-day needs
• Remain accountable to the community
• Actively encourage the exchange of information,
• Share understandable information throughout the
  process, and
• Evaluate the effort
• Involve Latinos as the agents of these
  effortrather than simply the targets.