Genomics and Health Disparities
WORKING DRAFT – as of 10 February 2009
Topic areas to be included in the Genomics and Health Disparities policy as discussed by Forum
members are in bold font. There are approximately a dozen themes identified as important for
this policy piece. Resources and references are subset in smaller text.
APHA policies tend to flow in small paragraphs, each dealing with a single topic. Example:
Realizing that _____ is of great public health concern as shown by numerous works, research,
investment from public and private agencies, and
Knowing that current policies, procedures, or known frameworks are insufficient for solving this
public health problem, and
Acknowledging that an ethically justified, culturally competent solution is need in order to
eliminate this health problem,
We recommend that the APHA take the following actions:
1 Support research
2 Encourage collaboration
3 etc
We have started setting up the draft in this structure, but it is incomplete.
Please take a look at this rough outline, and provide any comments you may have either during
the Policy Committee and Health Disparities Working Group call this Wednesday at 3pm EST,
or by email to Erin Payne, payneer@umich.edu. Feedback on structure, ordering, content, and
resources is all appreciated. Items can be moved around to the memberships liking, with the
exception of recommendations, which must remain at the end. Thanks for all your help – we
couldn’t do it without you.
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Genomics and Health Disparities
Recognizing health-for-all as the essence and core message of public health, while
acknowledging the importance of integrating scientific evidence into policies and decision
making processes, and understanding the value of evidentiary approaches to genetic health and
public health research, incorporating both expert knowledge and community input, we address
the one aspect of the range of issues at the heart of genomics and public health: Genomic1
literacy and workforce competency, and its implications for public health generally, and health
disparities in particular.
Health literacy, genetic literacy, cultural competence, public and professional education
Recognizing that health literacy is crucial for both public health professionals and the public; and
Health literacy has been shown to be essential in negotiation of healthcare services. This is true
not only for the individual but also for family members involved in care-giving and health
related decision-making (Bevan and Pecchioni, 2008); and
The need for health literacy among the general population is emphasized by the fact that
individuals rely on social networks to provide information and assist with decision-making (Bevan
and Pecchioni, 2008)
; and
Acknowledging that among health literacy, genetic literacy is particularly lacking; and
Using a recent definition of genetic literacy, which includes “sufficient knowledge and
appreciation of genetics principles to allow informed decision-making for personal well-being
and effective participation in social decisions on genetics issues” (Bowling et al. 2008 p. 16); and
Acknowledging that genetic literacy also includes an understanding that translation takes time
and that research findings do not immediately equate to changes in clinical options; and
Realizing that along with genetic literacy there is a need for cultural competence; and
Understanding that the goal of cultural competence, as defined by Betancourt et al. (2005), is to
create a health care system and workforce that are capable of delivering the highest quality care
to every patient regardless of race, ethnicity, culture, or language proficiency; and
Recognizing that emphasizing cultural competence education should result in a healthcare
workforce that is prepared to provide effective communication for diverse patient populations,
thereby increasing access to care among these populations, which is anticipated to reduce health
disparities (Betancourt et al. 2005); and
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“Genetics is the study of inheritance, or the way traits are passed down from one generation to another. Genes
carry the instructions for making proteins, which in turn direct the activities of cells and functions of the body that
influence traits such as hair and eye color. Genomics is a newer term that describes the study of all the genes in a
person, as well as interactions of those genes with each other and with that person’s environment.”
http://www.cdc.gov/genomics/faq.htm. Throughout this piece these two terms will be used interchangeably.
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Promoting public understanding is of particular importance as it is more costly to correct
misinformation and misunderstanding than to initially provide education (Terry and Davidson, 2000); and
Understanding that education is needed about health determinants and health disparities, both for
the public health workforce as well as the general public; and
Acknowledging that the general public has reported generally low levels of genetic knowledge,
but positive attitudes towards genetic information, particularly with respect to identifying
personal and familial disease risks (Scheuner et al. 2008); and
Recognizing that barriers to the use of genetic services included concerns of testing oversight,
privacy, and the level of knowledge among the non-genetics specialist healthcare community
(Scheuner et al. 2008)
; and
Concerns that the primary care workforce is unprepared to translate genetic and genomic
information and technologies to mainstream healthcare; bridging the gap between research and
clinical practice should be a top priority (Scheuner et al. 2008); and
Realizing that there is not only a knowledge gap with respect to genetic literacy, but also with
statistical literacy; an area health professionals in particular need a better understanding of in
order to more accurately communicate risks to the individual when deciding on treatment
options, for example (Monahan 2007):
 Examples

Taking all of these into consideration, APHA therefore:
-
Calls on health professional training programs to formally incorporate genetic/genomic
information into their curricula.
-
Calls on accrediting programs to perform needs assessments and develop curriculum and
appropriate guidelines.
-
Supports the development of additional training grants and educational opportunities to
increase the numbers of health professionals qualified to address genetics/genomics issues in
clinical and community/public health settings, as well as to create a diverse genomics
workforce, including individuals from traditionally underrepresented and underserved
populations.
-
Supports the development of linguistically and culturally-appropriate genetic/genomics
literacy-building programs for the public.
-
Supports increased national funding for studying determinants of health literacy as it pertains
to genetics/genomics (i.e., psychological, social, and cultural factors), and for studying how
literacy and related risk perceptions influence genetic/genomic (medical) decision-making.
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-
Encourages health professionals to create multi-disciplinary teams within clinical settings to
reduce costs and overlapping roles and services, as well as help to create continuity of care
(lower chance for loss to follow-up or "falling through the cracks") in genetic/genomic health
services and optimize delivery of services.
-
Supports increased funding for creating community based genetic/genomic health programs
that help people throughout the lifecourse.
-
Encourages genetic counseling services to equitably represent diseases impacting population
health.
-
Supports public education on the availability of genetic services.
-
Supports the development of guidelines and performance indicators to assess provider
education in cultural competency and essentials of genetic testing and referral.
-
Calls upon international, national, state, and local agencies to ensure access to culturally
competent, accurate, and complete genetic information sources and services for our diverse
populations.
-
Supports increased funding for education on the determinants of health and causes of health
disparities, with both the public health workforce and the general public.
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Bevan JL, Pecchioni LL. Understanding the impact of family caregiver literacy on patient health
outcomes. Patient Education and Counseling 2008;71:356-364.
Bowling BV, Acra EE, Wang L, Myers MF, Dean GE, Markle GC, Moskalik CL, Huether CA.
Development and evaluation of a genetics literacy assessment instrument for undergraduates.
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Centers for Disease Control and Prevention. Barriers to Dietary Control Among Pregnant Women
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