Genetic health literacy
Key words: genetics, genomics, genetic health literacy
I) Introduction:
Within the past 60 years, our understanding of genetics has grown exponentially. In this relatively short period, Watson, Crick, Franklin and Wilkin’s research uncovered the structure of DNA and the
Human Genome Project was completed. We are now entering into a new era characterized by genetic and genomic medicine, which has been made possible by rapidly evolving and complex technologies.
We face a number of complex challenges as our public health focus advances from genetics, “the study of inheritance, or the way traits are passed down from one generation to another ,” to genomics, “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” (Centers for Disease Control and Prevention, 2009;
Guttmacher, Porteous, & McInerney, 2007). (These two terms will be used interchangeably throughout this policy brief for ease of understanding.)
A barrier in the rapidly advancing genomic age is ensuring the public has access to the knowledge and skills needed to keep up with the technical intricacies of genomic information. This type of information, which can include genetic testing specifics, screening options, personalized medicine, risk assessment, etc. maybe be challenging for consumers (Johnson, Case, Andrews, Allard, 2005).
Genomic information can result in both positive health benefits for those who access it ( Collins, Green,
Guttmacher, Guyer, 2003 ) as well as potentially negative psychological consequences for an individual or relative when results are returned ( Rothstein, 1997 ).
A number of policy documents ranging from Healthy People 2010 to the Institute of Me dicine’s
Health Literacy: A Prescription to End Confusion and the American Medical Association’s Assessing the
Nation’s Health Literacy reports broadly address issues of patient health literacy. In addition, the APHA has issued genomics-related policies, which most notably include Policy 2002-1, The Role of Genomics in Public Health, and Policy 8732PP, Genetics and Public Health. Policy 2002-1 emphasizes the wide range of ways genomics impacts public health, but does not deal specifically with genetic health literacy
(APHA Policy Statement 2002-1). Policy 8732PP (APHA Policy Statement 8732PP) deals with a number of crucial issues related to genomics such as the success of newborn screening programs, technological advances resulting in more extensive genetic testing abilities, and the need to ensure equal access to services. What these policies do not address is need for ensuring that the public has access to resources that provide for an understanding of genetics programs and services or the need for health care providers who can successfully communicate risk assessment and other genomic information to patients, two crucial components of genetic health literacy. This is the first APHA policy that would address this critical issue.
Thus, recognizing health-for-all as the essence and core message of public health, 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 that incorporate both expert knowledge and community input, this policy brief will address one aspect among a range of issues at the intersection of genomics and public health: genomic literacy as a workforce competency, and its implications for public health.
Importance of health literacy:
(Pull in information from the Institute of Medicine, AMA, or others who have health literacy pieces on the books. Double check where APHA stands)
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--- be sure to include at least once citation each for Rima Rudd and Cathy Meade
Health literacy is crucial for both health professionals and the public. Evidence of this is provided by the fact that the American Medical Association has indicated that health literacy is a priority ( Schwartzberg et al 2004 ), by the increase in NIH funding of the area ( Nielsen-Bohlman et al 2004 ), and by its inclusion as a health communication objective in Healthy People 2010 ( US Dept HHS ).
While the term ‘health literacy’ is not new, its definition varies. It can be thought of as “the ability to read and understand health-related materials” (
Baker et al 1998 ) or as the “fundamental capacity for processing information” (
Lillie, Brewer, et al 2007 ). Other definitions include “skills in accessing health care systems” (
Davis, Williams, et al 2002 ) and as “ the evolving skills that allow one to apply health concepts in new situations, to participate in dialogues about health and medicine, and to use health information to make informed choices that improve quality of life and reduce health risks ( Zarcadoolas,
Pleasant, Greeer 2003 ).
Another version of health literacy classification, including basic/functional health literacy, interactive literacy, and critical literacy, breaks down not based on reading comprehension but on abilities allowed by the varying literacy levels. (Nutbeam 2000)
The US Department of Health and Human Services has defined health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions; ” this definition is the most cited ( US Dept HHS ).
Not only is there not a standard for the definition of health literacy, a gold standard for measuring health literacy is also lacking. There are, however, commonly used assessment tools, such as the Test of Functional Health Literacy in Adults
(TOFHLA) ( Parker 1995 ) and the Rapid Estimate of Adult Health Literacy in Medicine
(REALM) instruments ( Davis 1993 ). The TOFHLA assesses numeracy and reading comprehension in a medical context. The REALM assesses patient pronunciation when reading from a list of medical and layman terms for body parts and illnesses.
Despite the variations in definition and measurement, health literacy has been consistently related to a wide variety of health outcomes
Baker et al. (1998) found that patients with inadequate literacy were more likely to be hospitalized than patients with adequate literacy.
Due to a series of conflicting results (Baker et al 1998; Williams, Davis, et al 2002; Kuh and Stirling
BMJ 1995; Weiss, Blanchard, McGee et al J Health Care Poor Underserved 1994 ) the relation between literacy and health care costs needs to be studied further, particularly if low literacy results in worse health outcomes and increased health care costs.
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Research has shown that literacy levels are strongly correlated with patient knowledge of their chronic disease and that inadequate literacy complicates patient education
( Williams, Baker, Parker, Nurss 1998 ).
Low literate patients have also been found to have difficulty when recalling medical information ( Williams, Baker, Parker & Nurss, 1998 ), while patients without literacy deficits display greater information retention and preference for active decision-making ( Lillie,
Brewer, O’Neill, Morrill, Dees, Carey, Rimer 2007 )
Low literate patients have also been shown to be disadvantaged with respect to both written and verbal means of communication ( Davis et al. 2002 )
Nutbeam 2000
 Distinctions between functional health literacy, interactive health literacy and critical health literacy
 This approach infers that ‘adequate functional health literacy means being able to apply literacy skills to health related materials such as prescriptions, appointment cards, medicine labels, and directio ns for home health care’ ( Parker, 1995 )
 Health literacy is clearly dependent upon levels of fundamental literacy and associated cognitive development. Individuals with undeveloped skills in reading and writing will not only have less exposure to traditional health education, but also less developed skills to act upon the information received.
Davis, Williams, Etc 2002.
 According to the National Adult Literacy Survey, considered the most accurate portrait of literacy in our society, about one in five American adults may lack the necessary literacy skills to function adequately in our society. As patients, such individuals are at a disadvantage in their capacity to obtain, process, and understand cancer information and services needed to make appropriate health care decisions
 Literacy was also inversely related to the influence of friends and relatives. As the literacy level of women decreased, the influence of friends and/or relatives in their decision to get a mammogram increased ( Davis TC, Arnold C, Berkel H, et al. Knowledge and attitude on screening mammography among low-literate, low-income women. Cancer 1996;78:1912-1920.
)
 Patients with low health literacy may lack the numeracy skills needed to understand an apply cancer risk communication
 Schwartz concluded that common quantitative expressions had no meaning for many patients and may be useless and potentially confusing ( Schwartz LM,Woloshin S, Black WC, et al. The role of numeracy in understanding the benefit of screening mammography. Ann Intern Med
1997;127:966-972.
)
 Research by Anscher( Anscher MS, Gold DT. Literacy and laryngectomy: How should one treat head and neck cancer in patients who cannot read or write? South Med J 1991;84:209-213.
) documents that physicians are aware of the importance of patients’ literacy in communication
 The suggest that limited literacy is a barrier to patient participation in the decision-making process( Kim SP, Knight SJ,Tomori C, et al. Health literacy and shared decision making for prostate cancer patients with low socioeconomic status. Cancer Invest 2001;19:684-691.
)
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Baker, Parker, Williams, Clark 1998
 Thus, inadequate health literacy may be a marker for a complicated array of problems with provider-patient communication and health behaviors that affect the risk of hospital admission but are not directly related to reading ability
Roter, Erby, Larson, Wllington 2007

There is also evidence that patients with literacy deficits, compared with other patients experience more communication difficulties and have less satisfying medical visits, particularly in terms of the interpersonal and informational aspects of care ( Baker et al, 1996; Bennett Switzer, Barg, et al, 2006;
Schillinger, Bindam, Wang, et al, 2004 ).
Kim, Knight, Tomori, Colella, et al 2001
 Although patient involvement in the treatment decision process has been encouraged, low health literacy can limit patient understanding of the complex information about treatments and their probably QOL outcomes, and is a barrier to patient participation in the decision-making process
 In addition, prostate cancer knowledge varied with literacy scores, with lower knowledge scores corresponding to lower literacy scores, indicating that low literacy may hinder patient understanding of the shared decision making program
II) Genetic health literacy specifically
--- add in articles from Lipkus as well – expert on numeracy
Within health literacy, genetic literacy by health and public health professionals, consumers and the general public is particularly lacking. A review by Smerecnik et al
(2008) found that the public had limited knowledge of genetic risk factors. It has also been reported that the general public has generally low levels of genetic knowledge, but positive attitudes towards genetic information, particularly with respect to identifying personal and familial disease risks 14 . Studies have also indicated that the primary care workforce is currently unprepared to translate genetic and genomic information and technologies to mainstream healthcare 11,12 . ( include more health care provider examples)
 Yet, there is a severe shortage of qualified genetic counselors and general practitioners are generally unprepared to address genomics issues. Existing institutional resources (e.g., overburdened genetic counselors, busy general practitioners) are unlikely to be able to respond to this projected demand for health literacy-appropriate genomics education attendant to the
“mainstreaming of genetics into the practice of medicine” ( Collins & McKusick, 2001 ).
Genetic heath literacy, similar to health literacy as a broader category, has a number of circulating definitions. Erby, Roter, et al (2008) related health literacy and genetic literacy in their definition; "As a subset of health literacy, genetic literacy could be defined as the ability of an individual to understand concepts important to the use of personal genetic information.” Another recent definition includes “sufficient knowledge
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and appreciation of genetics principles to allow informed decision-making for personal wellbeing and effective participation in social decisions on genetics issues” 7 .
Sometimes genetic literacy is defined within a larger social context:
The critical function of the notion of genetic literacy is to focus on the context or the environment within which individuals and communities share information about genetics, try to understand the meaning of that information in their lives, and deliberate and debate with others how the applications of genetics should be used and for what purposes. In other words, genetic literacy must be understood as a ‘capacity,’ which is a property not of the individual taken in isolation but of the individual in the context of a social environment that provides effective resources, rights, and freedoms ” (
Jennings 2004, pg 38-39.)
A misconception that has accompanied the rapid advances in genetic technologies is that genetic research discoveries lead to instant changes within medical contexts.
Acknowledging that translation takes time and that research findings do not immediately equate to changes in clinical options 8,9 is also an important component to genetic health literacy. Our working definition goes beyond knowledge of genetic principles alone to include the basic numeracy skills needed to understand risk assessment within a genetic health literacy context.
Despite variations in genetic health literacy definitions, a common assessment tool for genetic health literacy is the Rapid Estimate of Adult Literacy in Genetics
(REAL-G).
“The REAL-G represents a screening tool that can be used to quickly identify low literate patients in the clinical genetics context or to quantify context-specific literacy within a research setting” (
Erby, Roter, Larson, Cho 2008; pg 174 ).
Thompson, Whal, Fatone, Brown, Kwate, Valdimarsdottir 2004
In order to make an informed decision about testing, individuals should have some understanding of complex genetic information as well as the potential positive consequences of testing (eg, improved medical decision-making, increased informatio n about relatives’ cancer risk) and the negative consequences of testing (eg, increased worry about one’s health status and the health of relatives, negative emotional reactions, and possible insurance or employment discrimination) ( Thompson
HS,Valdimarsdottir HB, Duteau-Buck C, et al. Psychosocial predictors of BRCA counseling and testing decisions among urban African-American women. Cancer Epidemiol Biomarkers Prev.
2002;11:1579-
1585.; Lerman C, Narod S, Schulman K, et al. BRCA1 testing in families with hereditary breast-ovarian cancer: a prospective study of patient decision making and outcomes. JAMA.
1996;275:1885-1892.;
Donovan KA,Tucker DC. Knowledge about genetic risk for breast cancer and perceptions of genetic testing in a sociodemographically diverse sample. J Behav Med . 2000;23:15-36.; Hughes C, Gomez-
Caminero A, Benkendorf J, et al. Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk. Patient Educ Couns . 1997;32:51-62.
).
Erby, Roter, Larson, Cho 2008

Identi fication of patients’ context-specific vocabulary deficits prior to initiating education instructions can make it easier to tailor materials and discussions to appropriate literacy levels ( Davis and Wolf,
2004 )
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
The rapid advances linking genetic susceptibility to a wide range of medical conditions have made the communication of complex genetics concepts an increasingly common, but nevertheless difficult and daunting medical task.

The utility of the REAL-G exists not only in its ability to identify patients with literacy deficits, but also in its ability to assist clinicians in more effectively meeting the informational needs of patients with such deficits.
Roter, Erby, Larson, Wllington 2007

Many studies have linked limited educational background with low interest and use of genetic counseling services ( Culver, Burke, Yasui et al, 2001; Glanze, Graove, Lerman, et al, 1999 ). While there are many reasons why poorly educated women do not access genetic services, one may be difficulty understanding genetics-related information and concepts, like probability and cancer risk
( Schwartz, Woloshin, & Welch, 1997 ).
III) Emphasizing the need for cultural competence/understanding/knowledge within the context of genetic health literacy
--- Dean review – explanatory models of cancer
--- Singer, tarnin?
--- Patient
– physician relationship examples should go in this section
At this point, this concept is generally lacking. Drawing from the body of literature related to genetic/genomics…
Realizing that along with genetic literacy there is a need for cultural competence;
Recognizing that the diversity within the current genetic counseling and medical genetics workforce is not reflective of the general public and that a diverse professional workforce leads to improved cultural and linguistic responsiveness among patients 15 ;
Davis, Williams, Etc 2002.
 The American Medical Center’s Cancer Research Center, established the National Work Groups on Cancer and Literacy (NWG). … The NWG reviewed numerous studies that documented the need for low-literacy and culturally-appropriate materials and programs to help reduce the disparities in cancer screening and treatment ( 32,40, 79-82 )
IV) Genetic health literacy as it relates to healthcare decision making and risk assessment
--- here, be sure to separate workforce needs from patient decision-making & patient relationships. The later can be tied in perhaps during the competency piece
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Health literacy has been also related to healthcare decision-making. Health literacy has been shown to be essential in the negotiation of healthcare services for both the individual and the family members involved in care-giving and health related decisionmaking. The need for health literacy among the general population, patients and families for example, is further emphasized by the fact that individuals rely on social networks to provide information and assistance in decision-making 1 .
Given the probabilistic and predictive nature of genetics information, healthcare providers and/or their clients must evaluate not only test results but their meaning 11 the context of what it means to be “healthy” 12 ;
in
Realizing that there is not only a knowledge gap with respect to genetic literacy, but also with statistical literacy; an area in which health and public health professionals need a better understanding in order to more accurately communicate risks to individuals when deciding on prevention and treatment options 17 ; for example, decisions whether to screen or test individuals for cystic fibrosis 18 and understanding test results 19 , pharmacologic measures versus lifestyle changes for heritable heart arrhythmias 20,21 , or genetic testing and monitoring versus surgical prophylaxis in familial breast cancer 22 . It has been shown that language choice, complexity of information, and types of visual representations all impact risk communications 23,24 .
Johnson et al. 2005
 While it is estimated that only 5-10% of cancers may be genetically determined, the public generally is unaware of the basics of genetics and has been found to vastly overestimate their individual risks ( Bottorff, Ratner, Johnson, Lovato, & Joab, 1998; Case, Johnson, Andrews,
Allard, & Kelly, 2005 ). According to Marteau and Croyle (1998 ), “Interest in undergoing testing is more strongly related to per ceived risk than objective risk” (p 695).
Lillie, Brewer, O’Neill, Morrill, Dees, Carey, RImer 2007
 Health literacy may affect women’s capacity to learn about the new genomic tests as well as their desire for informed participation in their medical care

Personalized risk-for-recurrence estimates may inform treatment decisions, as patients with high risk for recurrence may choose different and more aggressive treatments, whereas patients with low riskfor-recurrence may avoid unnecessary treatments and the associated side effects and expense ( 3,8 )

One potential reason for misunderstanding risk is low health literacy
 In the context of genomic medicine, health literacy may affect patients’ abilities to remember risk information and to use it as active participants in decisions about their medical care [retention of information]
Hunt, Castañeda, deVoogd 2006
 Patients’ ability to make informed choices about clinical procedures often requires that they interpret risk statistics, which may be difficult to understand and apply
 We argue that, while clinicians discuss risk in clinically meaningful terms, patients must translate the clinical notion of risk into personally meaningful terms, in order to apply it to their own situation
 Risk estimates are most likely to be interpreted in the same way by clinicians and patients when they are presented in “objective,” quantitative terms ( Benkendorf J and Prince M. Does indirect speech
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promote non-directive genetic counseling? Results of a sociolinguistic investivation. American Journal of Medical Genetics 2001; 106(3):199-207 – and- Hallowell et al. 1997 )
 However, other studies have found that, even when discussion of risk are kept to strictly quantitative terms, personal and situational factors strongly shape patients’ perception of risk.
 Generally, when patients did talk about risk, they employed a simple dichotomous notion of “high” or
“low” risk rather than the more specific consideration of risk status implied by enumeration. Even when they did name a specific number, this dichotomous thinking remained their emphasis, with the numbers being invoked only to illustrate their point that their risk was either high or low.
 For them, the at-risk concept was not understood to mean that something could be wrong but that something actually was wrong
V) Workforce development
Johnson et al. 2005
 Existing institutional resources (e.g., overburdened genetic counselors, busy family practitioners) are unlikely to be able to respond to projected demand attendant to the “mainstreaming of genet ics into the practice of medicine” ( Collins & McKusick, 2001 ).
Williams, Davis, Parker, Weiss 2002
 Patients with poor health literacy have a complex array of communication difficulties, which may affect health outcomes
 The terminology of “language” that health care providers use to communicate with patients is a barrier for patients with inadequate health literacy
 Patients with limited literacy skills may also have higher health care costs
Anderson, Black Monsen, Prows, Tinley, Jenkins 2000.
This demand cannot be met by current numbers of certified genetic specialists( Scanlon C. Genetic advances: policy and perils. In: Lashley F, editor. The genetics revolution: implications for nursing.
Washington (DC): American Academy of Nursing; 1997.
), including approximately 1000 medical geneticists( Touchette N, Holtzman N, Davis J, Feetham S. Toward the 21st century: incorporating genetics into primary health care. Rainview (NY): Cold Spring Harbor Laboratory Press; 1997.
) and more than 1400 genetic counselors( Fine B. Genetic counseling and women. Women’s Health Issues
1997;7:220-4.
); nor are “most practicing physicians” adequately prepared to deliver genetic information or to accurately interpret results from genetic tests( Stephenson J. As discoveries unfold, a new urgency to bring genetic literacy to physicians. JAMA 1997;278:1225-6.
).
 Adequate preparation to ensure that the nursing profession can meet this challenge has begun
 The International Society of Nurses in Genetics is preparing the nursing profession for participation in a genetic paradigm in health care by fostering collaborative relationships with <other professional organizations and policy makers by on the national an international levels>
 Adequate preparation of ensure that nurses obtain this specialized knowledge and skill requires education programs about genetics geared to basic and advanced levels of nursing practice
--- Comment: look for information from the Occupational Outlook Handbook...also, don't forget the social workers...they're evaluating psychosocial needs pre and post genomic services and helping refer for support groups, counseling, financial resources, etc.
Guttmacher, Porteous, McInerney 2007
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 In the clinical setting, genetics and genomics share a focus on probability and risk assessment, and on communicating both of these to health-care professionals and patients in ways that optimize decision making. So, an important goal in educating health-care professionals in genomics is to enable them to understand and utilize genetic-based probability and risk assessment, and to communicate effectively about them.
 A major challenge of genomics medicine lies in understanding and communicating disease risk in order to facilitate and support the patient’s informed decision making. An understanding of genetic principles is vital to meet this challenge
 The majority of primary care providers do not see the calculation of genetic risk as part of their role, but they recognize that they have a crucial part in identifying individuals who require referral to genetic services
 As with all health-related disciplines, education about genetics and genomics encompasses preparation for clinical practice and education in the practice context itself
 That misconception is itself a manifestation of a more fundamental and deeply entrenched assumption, which is reflected in textbooks and informal discourse, that diseases fall into genetic and non-genetic categories rather than into a continuum of interplay between genetic and non-genetic components
 A literature review by Suther and Goodson ( Suther, S. & Goodson, P. Barriers to the provision of genetic services by primary care physicians: a systematic review of the literature. Genet. Med.
5,70 –
76 (2003).
), for example, identified a lack of knowledge about genetics – and a related lack of confidence in addressing genetics issues in the clinical setting
 However, deficiencies in genetics knowledge among medical personnel are not limited to students and practitioners. Billings et al ( Billings, P. R. et al. Ready for genomic medicine? Perspectives of health care decision makers. Arch. Intern. Med . 165, 1917 –1919 (2005).
) found that a lack of genetics knowledge among senior medical officers in major health plans in the US is likely to be an impediment to the integration and reimbursement of genetic services
Chen, Kwok, Goodson 2008
 According to the CDC( Centers for Disease Control and Prevention. Genomic Competencies for the
Public Health Workforce,2001. Available at: http://www.cdc.gov/genomics/training/competencies/comps.htm. Accessed July 14, 2007.
), as members of the public health workforce, health educators should develop 7 specific genomics competencies
 US health educators’ attitudes toward genomic competencies…Findings indicated that the sample espoused negative attitudes toward genomic competencies, low awareness levels, and deficient knowledge. Yet exposure to training in genetics and genomics appeared to influence attitudes, awareness, and knowledge ( Chen LS, Goodson P. Public health genomics knowledge and attitudes:
A survey of public health educators in the United States. Genet Med. 2007;9:496 –503.
)
 How likely are health educators to adopt genomic competencies into health promotion research and practice?...In general, likelihood of adoption was low (29.3%) and varied
 T he final model indicated that participants’ likelihood to adopt genomic competencies into health promotion was significantly affected by their awareness, their attitudes, and self-efficacy (p<0.001 for all 3)
 Health educators… had a more positive attitude toward public health genomics if they believed that genomics and public health genomics were complex(P<0.001), if they saw that public health genomics had an advantage over traditional forms of health promotion intervention (p<0.001)
 These finding suggest, as similarly documented for other health professionals( Suther SG, Goodson
P. Texas physicians’ perceptions of genomic medicine as an innovation. Clin Genet. 2004;65:368 –
377.; Irwin DE, Millikan RC, Stevens R, et al. Genomics and public health practice: a survey of nurses in local health departments in North Carolina. J Public Health Manag Pract. 2004;10:539 –544.
), that health educators do not appear to be ready for their professional role in genomics
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Kim’s manuscript draft
 Genomic research is therefore raising important new issues in communicating with patients and the general public about genetic contributions to disease, both in terms of the content of disease risk messages and the much larger population to which these messages are relevant
 It is probable that at lease some individuals who undergo such testing will look to health care providers and public health practitioners for assistance with interpretation of results and information on preventive options ( Hunter DJ, Khoury MJ, Drazen JM. Letting the genome out of the bottle – Will we get our wish?
New England Journal of Medicine 2008; 358(2):105-07.
)
 Public health professional will be called upon to translate the latest advances in genomics and educate people about how they can use this new knowledge to make important decisions about their health. As noted by Chen and Goodson(2007)( Chen LS, Goodson P. Public health genomics knowledge and attitudes: A survey of public health educators in the United States. Genetics in Medicine 2007; 9(8): 496-503.
), this will mean addressing issues related to the public’s levels of knowledge and skills related to genetics
 Mesters et al. (2005) found similar gaps in and overestimation of understanding among 69 individuals participating in focus groups. In this study, although participants talked about genes and DNA in association with cancer, their understanding of these concepts did not go deeper than word familiarity
( Mesters I, Ausems A, DeVries H. General public’s knowledge, interest and information needs related to genetic cancer: An exploratory study. European Journal of Cancer Prevention 2005; 13(4): 305-20.
)
 Individuals with limited health literacy have, on average, lower levels of health knowledge, increased incidence of chronic illness, lower utilization of preventive health services, and poorer self-reported health ( Nielsen-Bohlman L, Panzer AM, Kindig DA eds. Health Literacy: A Prescription to End Confusion. Washington,
National Academies Press, 2004
–and-
Berkman N, Pignone MP, DeWalt D, Sheridan S. Health Literacy: Impact on Health
Outcomes. Rockville MD, Agency for Healthcare Research and Quality, 2004 )
 Adults with limited health literacy are likely to face substantial challenges in understanding and using genetic and genomic information ( Johnson, Case, Andrews, Allard 2005 )
 Limited health literacy is therefore likely to pose a particular challenge to communication with underserved communities about genetics and genomics
 The IOM has operationalized health literacy as having the following components: oral literacy
(listening and speaking skills); print literacy (reading and writing skills); and numeracy (basic quantitative skills), in additional to cultural and conceptual knowledge ( Nielsen-Bohlman L, Panzer AM, Kindig
DA eds. Health Literacy: A Prescription to End Confusion. Washington, National Academies Press, 2004 )
 Lillie et al. (2007) found that individuals with lower health literacy recalled less information about a genomic test that identified recurrence risk and had less preference for active decision-making about the test ( Lillie, Brewer, O’Neill, Morrill, Dees, Care, Rimer 2007 )
 Health numeracy, which relates to individuals’ skills with mathematical concepts and their applications, is becoming increasingly recognized as important in all medical decision-making and risk communication, including in the domains of genetics and genomics. Health numeracy has been defined as “the degree to which individuals have the capacity to access, process, interpret, communicate, and act on numerical, quantitative, graphical, biostatistical, probabilistic health information needed to make effective health decisions” (
Goldbeck AL, Ahlers-Smith CR, Paschal AM. A definition and operational framework for health numeracy. American Journal of Preventive Medicine 2005; 29(4): 375-76.
, pg
375)
 The 2003 National Assessment of Adult Literacy found that only 13% of US adults were proficient in quantitative literacy (numeracy), while 22% had below basic quantitative literacy and a third had basic quantitative literacy skills ( National Center for Education Statistics. National Assessment of Adult Literacy (NAAL): A
First Look at the Literacy of America’s Adults in the 21 st
Century. Washington, U.S. Department of Education, 2006; NCES
2006-470.
)
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Knowing about the rise of genomics, the importance of health literacy, and specifically genetic health literacy…
These are the important points to take away. 1,2,3.
Taking all of these into consideration, APHA therefore:
(Review other policies at APHA for recommendations and positions on genetics, health literacy, cultural competence in a genetics setting, etc.)
1. Calls on accrediting programs to perform needs assessments and develop curriculum and appropriate guidelines related to genetics/genomics and genetic health literacy among health professionals.
2. Supports the development of linguistically and culturally appropriate genetic/genomics literacy-building programs for both the public and health professionals.
3. 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.
4. 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.
5. 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.
6. Encourages genetic counseling services to equitably represent diseases impacting population health.
7. 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.
--- CDC competencies
Suggested references
Kutner M, Greenberg E, Jin Y, Paulsen C, White S. The Health Literacy of America's Adults: Results from the 2003 National Assessment of Adult Literacy. Washington, National Center for Education Statistics,
2006.
Brewer et al. have an article called “Health Literacy and Cancer Risk Perception: Implications for
Genomic Risk Communication” that just came out in Medical Decision Making. --- Did not find.
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References:
Centers for Disease Control and Prevention, 2009
Guttmacher, Porteous, & McInerney, 2007
Johnson JD, Case DO, Andrews JE, Allard SI. Genomics- The perfect information-seeking research problem. Journal of Health Communication 2005;10:323-329.
Rothstein, 1997
Collins, Green, Guttmacher, & Guyer, 2003
Collins & McKusick, 2001
APHA Policy Statement 2002-1: The Role of Genomics in Public Health. APHA Public Policy Statements,
1948-present, cumulative. Washington, DC: American Public Health Association, current volume.
APHA Policy Statement 8732PP: Genetics and Public Health. APHA Public Policy Statements, 1948present, cumulative. Washington, DC: American Public Health Association, current volume.
Schwartzberg et al 2004
Nielsen-Bohlman et al 2004
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