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Strengthening Genetic and Genomic Literacy
Policy Date: 11/9/2010
Policy Number: 201012
APHA policy statement 2002-1: The role of genomics in public health1
APHA policy statement 87-32PP: Genetics and Public Health2
APHA policy statement 2009-15: Integration of core public health education into undergraduate curricula3
APHA policy statement 2010-9: Health literacy: confronting a national health a problem4
Within the past 60 years, our understanding of genetics has grown substantially.5,6 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 a new era characterized by genomic medicine, which has been made possible by rapidly evolving and complex technologies. However, we face several complex challenges as our public health focus advances from genetics to genomics.5,6 To distinguish between these concepts, we use the distinction made by the Centers for Disease Control and Prevention (CDC) in its 2001 Genomic Workforce Competencies.7 Thus, genetics will refer to “single gene disorders . . . which affects only a small subset of our population,” whereas genomics “combines both the traditional roles of genetics and evidence from the Human Genome Project that encompasses the notion that certain genes, interacting with other genetic and environmental factors, predispose people” to chronic, complex health conditions “and that this information can be used to prevent disease and improve health.”7p1–2
Genetics and genomics are integral pieces of the ecological frameworks common in public health models (e.g., Dahlgren and Whitehead in the 2002 Institute of Medicine report).8 These models view health and disease relationally as interactions of factors at multiple levels: from genetic or genomic, to individual, family, institutional, community, and environmental. This is the first APHA policy that addresses 1 aspect among a range of issues at the intersection of genetics, genomics, and public health: genetic and genomic literacy as a public health workforce competency and its implications for public health.
Related Genomic Era Policies
A challenge 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 genetic and genomic information. This type of information, which can include genetic testing specifics, screening options, personalized medicine, and risk assessment, may be challenging for consumers.9 Genetic and genomic information can result in both positive health benefits for those who access it,10 as well as potentially negative psychological consequences for an individual or relative when results are returned.11
Several policy documents ranging from Healthy People 2010 to the Institute of Medicine’s Health Literacy: A Prescription to End Confusion and the American Medical Association’s Assessing the Nation’s Health Literacy reported broadly address issues of patient health literacy.12–14 In addition, the APHA has issued genomics-related policies, which most notably include Policy 2002-1, The Role of Genomics in Public Health,1 and Policy 87-32PP, Genetics and Public Health.2 Policy 2002-1 emphasizes the wide range of ways genomics affects public health,1 but does not specifically address genetic and genomic literacy. Policy 87-32PP addresses several 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.2 The current policy complements APHA policies 2009-15 Integration of Core Public Health Education into Undergraduate Curricula3 and a 2010 policy, Health Literacy: Confronting a National Health a Problem.4
What these policies do not address is the 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, 2 crucial components of genetic and genomic literacy.
In 2002, the Institute of Medicine acknowledged this growing requirement for a public health workforce with sufficient knowledge of genetics and genomics, declaring that health professionals must be competent in genomics to effectively address future challenges facing society.15 The Secretary’s Advisory Committee for Health, Genetics, and Society (SACGHS) issued the draft report, Genetics Education and Training of Health Care Professionals, Public Health Providers, and Consumers, evidencing the need for and recommending genetic literacy in these groups.16 Recognition of this need for health care providers capable of communicating genetic and genomic information is demonstrated further by recent curriculum changes for medical education. Examples are the inclusion of “interpersonal and communication skills” as a core competency by the Accreditation Council for Graduate Medical Education (ACGME),17 and incorporation of medical genetics curriculum into residency requirements supported by the ACGME and the Association of American Medical Colleges.18 These additions promote genetic and genomic literacy in the next generation of medical practitioners.
Importance of General Health Literacy
Health literacy is crucial for public health professionals and the general public. Evidence of this need is supported by the previously cited SACGHS draft report,16 CDC’s creation of an online training course in health literacy for public health professionals,3 and the American Medical Association’s inclusion of health literacy as a priority19; by the increase in NIH funding of the area13; and by its inclusion as a health communication objective in Healthy People 2010.12
Although the term health literacy is not new, its definition varies. The concept can be thought of as “the ability to read and understand health-related materials”20p792 or as the “fundamental capacity for processing information.”21p250 Other definitions include “skills in accessing health care systems”22p136 and “the evolving skills and competencies needed to use health information and concepts to make educated choices, reduce health risks, and improve quality of life … apply health concepts and information to novel situations . . . [and] participate in ongoing public and private dialogues about health, medicine, scientific knowledge, and cultural beliefs.”23p119 Another version of health literacy classification, including basic/functional health literacy, interactive literacy, and critical literacy, defines literacy not based on reading comprehension but on abilities allowed by the varying literacy levels.24 The US Department of Health and Human Services’ and Institute of Medicine’s definition of health literacy states that it is “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”12p294,13p32 This definition is the most often cited.
A standard for defining health literacy is lacking, as is a gold standard for measuring health literacy. There are, however, commonly used assessment tools, such as the Test of Functional Health Literacy in Adults (TOFHLA)25 and the Rapid Estimate of Adult Health Literacy in Medicine (REALM)26 instruments. The TOFHLA assesses numeracy and reading comprehension in a medical context. The REALM assesses patient pronunciation when reading from a list of medical and laymen’s terms for body parts and illnesses. Brief versions of these tools (S-TOHFLA and REALM-SF) are also commonly used when needed.
Despite variations in definition and measurement, health literacy has been consistently related to a wide variety of health outcomes. Examples include likelihood of hospitalization,20 patients’ knowledge and understanding of their chronic disease(s),27 difficulty with medical information retention and recall,21,27 preference for active decision making,21,28 and abilities with respect to both written and verbal means of communication.22 In addition, although there are conflicting results,20,29–31 the relation between literacy and health care costs needs to be studied further, particularly if low health literacy results in worse health outcomes or treatment adherence and increased health care costs.
Genetic and Genomic Literacy
Within health literacy, genetic and genomic literacy among health care and public health professionals, consumers, and the general public is particularly lacking. A review by Smerecnik and colleagues found that the public had limited knowledge of genetic risk factors.32 Studies have also reported that the public has generally low levels of genetic knowledge but positive attitudes toward genetic information, particularly with respect to identifying personal and familial disease risks.33 Limited knowledge is a contributor to declines in the public understanding and acceptance of evolution as a genetic driving factor.34 Interest in learning more about genetics and genomics has been expressed in dialogues at the community level, suggesting a role for community and advocacy organizations in transmitting information and offering input on the shaping of genetic and genomic literacy efforts.35,36
As a long-term approach to improving the genetic and genomic literacy of the general public, strong arguments can be made for the need to revamp K–12 education from the perspectives of both science and health to incorporate genomic approaches to common health issues.35 A national survey of public health educators indicated adequate understanding of applied topics, such as folic acid’s role in preventing neural tube defects, but shortcomings in basic knowledge related to genetic testing and risk assessment.38 Additional studies have indicated that the primary care workforce is currently unprepared to translate genetic and genomic information and technologies to mainstream health care.4,33,39–41
Genetic and genomic literacy, similar to the broader health literacy category, has several circulating definitions. Erby and colleagues 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.”42p178 Another recent definition 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.”43p16 Genetic literacy, and thus genomic literacy, may also be defined within a larger social context44p38–39:
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
For example, in the past, public misunderstanding of sickle cell disease has reduced the capacity for people to act in an informed way.
Another misconception that has accompanied the rapid advances in genetic and genomic technologies is that their research discoveries lead to rapid changes within medical contexts (e.g., diagnosis, prevention, treatment). Acknowledging that translation takes time and that research findings do not immediately equate to changes in clinical options45,46 is also an important component of genetic and genomic literacy. Our working definition goes beyond knowledge of genetic or genomic principles alone to include the basic numeracy skills needed to understand risk assessment within a genetic and genomic literacy context.
Despite variations in genetic health literacy definitions, researchers have developed an assessment tool specifically to assess this area. The Rapid Estimate of Adult Literacy in Genetics “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.”42p174 By contrast, the Genetics Literacy Assessment Instrument (GLAI) assesses genetic knowledge among undergraduates.43
Genetic and Genomic Literacy in Health Care Decision Making and Risk Assessment
Health literacy has also been linked to health care decision making. Adequate health literacy is essential for both patients and family members involved in care giving, negotiating health care services, and making health-related decisions.47 Decision making in a genetics and genomics context can include use of detailed results from genetic screening, genetic and genomic testing, and family health history. Given the probabilistic and predictive nature of genetic and genomic information, public health practitioners, including health care providers and those they serve, must evaluate not only genetic and genomic test results but also their meaning39 in the context of what it means to be healthy.40
This need to understand and integrate test results into decision making provides a rationale for including basic numeracy skills needed to understand risk assessment into our working definition of genetic health literacy. Risk assessment, or statistical literacy, and risk stratification are areas in which health and public health professionals need a better understanding to more accurately communicate risks to people and families when deciding on prevention and treatment options.48,49 Examples include decisions about whether to screen or test people for cystic fibrosis49 and understanding test results,50 pharmacologic measures versus lifestyle changes for heritable heart arrhythmias,51or genetic testing and monitoring versus surgical prophylaxis in familial breast cancer.52 This exchange of information between health professionals and consumers can be an intricate process because it has been shown that language choice, complexity of information, and types of visual representation all affect risk communication.53,54
An emphasis on understanding risk information is particularly important because “interest in undergoing testing is more strongly related to perceived risk than objective risk.”9p325 These decisions are further affected by the patients’ general notion of a high versus low risk,55 which may influence not only their interpretation of risk statistics but also their interest in testing and treatment options. Patients having problems understanding risk information are of particular concern, because the idea of risk may not translate into the idea that “something could be wrong but that something actually was wrong.”55p210
Public health genetics and genomics educational activities broadly include training health care personnel and community health workers to increase their awareness of genetics and genetic services; providing information and sponsoring lectures for health professional and lay communities; communicating the role of genetics and genomics in public health to policy makers and community stakeholders; facilitating the integration of genetics and genomics into future care through continuing public health and medical education; and providing genetic and genomic information resources to hospitals, physicians’ offices, and laboratories.56 The public health workforce requires a basic and applied understanding of genetics and genomics to offer the needed educational resources, relay genetic information to people and families, and professionally benefit from this expanding body of information.
As the genomic age becomes a more concrete realization, more needs to be done to ensure that the current workforce is prepared to meet the need for delivering and interpreting genetic and genomic information.41,57–62 Some professions have already begun the necessary steps to meet this challenge.63 According to Guttmacher and colleagues, “An important goal in educating health-care professionals in (genetics and genomics) is to enable them to understand and utilize genetic-based probability and risk assessment, and to communicate effectively about them.”6p151 This education and broader group effort should start with fulfilling the CDC’s Genomics Competencies for the Public Health Workforce, which includes explaining risk and benefit in health and disease assessment by public health professionals engaged in services evaluating people and families.3 Other public health roles listed in the Competencies depend on genetic literacy while differing from each other in its specific application (e.g., in collection of genetics-related data, planning for genomic services, ensuring laboratory testing standards, and evaluating knowledge of prevention measures).64 Developing methods to facilitate genetic and genomic education is particularly important as the workforce grows. The Occupational Outlook Handbook projections for the 2006–2016 decade for the health and public health workforce report marked job growth (up to 26%) among groups such as physicians,65 registered nurses,66 social workers,67 and health educators.68
Professional associations consisting of physicians, midlevel practitioners, and genetic counselors support the need for improved genetic and genomic literacy within the public health workforce. For example, the American Society of Human Genetics (ASHG), representing human genetics specialists worldwide, declared the enhancement of genetics education and the preparation of future professionals for an increasingly genetics-based health care system to be essential parts of its mission.69 The International Society of Nurses in Genetics recently released a position statement stating the need for health care professionals educated “in the expanding role of genetics and genomics as integral components in the promotion of the public’s health and well-being.”70p1 In the same vein, the American College of Medical Genetics has increased outreach efforts since 2006 for enhancing the genetic literacy of all health care professionals.71
The National Coalition for Health Professional Education in Genetics (NCHPEG) was established in 1996 by the American Medical Association, the American Nurses Association, and the National Human Genome Research Institute.72 NCHPEG is an umbrella organization with a mission to “promote health professional education and access to information about advances in human genetics to improve the health care of the nation.”72p1 The organization brings together diverse groups to focus on the educational needs of health care professionals and works to integrate genetics content into the knowledge base of health professionals and students of the health professions by developing educational tools and information resources that are accessible and useful to the target audience.
The support of such public health professional organizations is essential, as the 2002 Institute of Medicine report declares: the onset of the 21st century has redefined the concept of a public health system to include a “complex network of individuals and organizations that have the potential to play critical roles in creating the conditions for health,” which work toward a common health goal.15 This shift away from government-focused health care delivery requires that federal and state public health agencies create partnerships with practitioners at all levels “to build consensus on health priorities and support community and individual health actions.”8p33 Because of the interdisciplinary nature of this new public health system,4 the APHA should work with ASHG, NSGC, NCHPEG and ACGME to provide an effective public health service to consumers.
Development of the workforces’ understanding of genetics and genomics needs to go beyond an understanding of these concepts to include working knowledge of how genetics and genomics relates to other determinants of health. Historical attempts to use genetics in public health have not always been successful—for example, a eugenics movement attempted to breed “better” humans in which tens of thousands of people were involuntarily sterilized.73,74 In addition, programs screening for sickle cell in the 1970s conflated race and ancestry (still a common misconception today), increased genetic discrimination, and stimulated screening mandates for marriage licensing.75 These policies served to propagate a history of discrimination rather than to improve health. Our genes play various roles in prescribing our current or future health and happiness, but they rarely act alone. They often contribute to risk in addition to the environmental and social determinants of health. It is now inexorably clear that the environments in which people live, work, and play, whether they are physical, chemical, ancestral, or psychosocial, affect our genomes, the expression of genes, and ultimately our health individually and collectively. In improving genetic and genomic literacy among the public health workforce, we have a renewed opportunity and obligation to reconcile this knowledge with the practice of public health’s core functions and essential services.
Genetic and genomic literacy must also include appropriate methods of communication with patients and health care consumers in general. Hunt and colleagues argued, “While clinicians discuss risk in clinically meaningful terms, patients must translate the clinical notion of risk into personally meaningful terms, to apply it to their own situation”55 Chronic diseases pose special challenges for risk interpretation because people may harbor personal fatalistic views that contrast with scientific concepts.76 The intricate medical terminology surrounding genetics and genomics that providers rely on to communicate with patients may be viewed as another obstacle in understanding among those with low health literacy.29 In addition, similar to medicine and other health fields, the diversity within the current genetic counseling and medical genetics workforce may not be reflective of the general public.77–79 This mismatch is problematic given that a diverse professional workforce leads to improved cultural and linguistic responsiveness among health care recipients.80 We stress the need for emphasizing the importance of cultural competence with respect to communication as it relates to genetic and genomic literacy as part of workforce development.
Given the rise of genomics, the importance of health literacy, and specifically genetic and genomic literacy, we therefore recommend that APHA—
1. Encourage collaborations between schools of public health and public health programs, government agencies, and regional networks to develop curricula and educational segments that will address genetic and genomic literacy in the existing and future public health workforce.
2. Encourage collaborations between schools of public health and public health programs, government agencies, professional and community-based organizations, and genetics advocacy groups to disseminate information promoting genetic and genomic literacy on topics relevant to community members, and use public input on ways to enhance genetic and genomic literacy at the community level.
3. Support the development of linguistically and culturally appropriate genetic and genomic literacy-building programs for both the public and health professionals to further the core public health functions–assessment, assurance, and policy development—specific to genetic conditions and family health history.
4. Support the development of additional training grants and educational opportunities to increase the numbers of health professionals qualified to address genetic and genomic issues in clinical and community/public health settings, as well as to create a diverse genomics workforce, including people from traditionally underrepresented and underserved populations.
5. Support increased national funding for studying determinants of health literacy as it pertains to genetics and genomics (i.e., psychological, social, and cultural factors) and for studying how genetic and genomic literacy influence risk perception in people, families, and community members.
6. Encourage inclusion in standards for genetic and genomic literacy the understanding that both genetic conditions and multifactorial conditions with a genomic component affect the health of all populations.
7. Call on public health and health care service agencies and related organizations to ensure access to culturally competent, accurate, and complete genetic and genomic information and resources for conditions affecting our diverse populations.
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