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W2914698748 abstract "Personalized genetic information is not widely utilized as a resource in learning environments, in part because of concerns about data privacy and the treatment of sensitive personal information. Here we describe the implementation of a curriculum centered on analyzing personalized genetic-ancestry test results during two-week science summer camps for middle-school-aged youth. Our research focused on how the examination of personalized DNA results affected learners’ subsequent perceptions and performance, as measured by in-camp pre- and post-tests and surveys, analysis of voluntary student talk captured by audio and video recordings, and periodic one-on-one post-camp follow-ups. The curriculum was grounded in Next Generation Science Standards (NGSS) and focused around the central question of “Who am I?” Campers approached this question via guided lessons designed to shed light on their genetic uniqueness, the many attributes of their genotype and phenotype shared with others, their more distant genetic and evolutionary ancestries, and their roles as active agents in the healthy continuation of their lives. Data relevant to these questions came from edited subsets of ancestry-informative single-nucleotide polymorphisms (SNPs) and phenotype-related SNPs from the campers’ genotype results, which their parents had received from a direct-to-consumer vendor. Our approaches to data privacy and the discovery, disclosure, and discussion of sensitive information on paternity, carrier status, and ancestry can be usefully applied and modified for many educational contexts. On the basis of our pilot implementations, we recommend additional and expanded research on how to incorporate personalized genetic ancestry information in a variety of learning contexts. Personalized genetic information is not widely utilized as a resource in learning environments, in part because of concerns about data privacy and the treatment of sensitive personal information. Here we describe the implementation of a curriculum centered on analyzing personalized genetic-ancestry test results during two-week science summer camps for middle-school-aged youth. Our research focused on how the examination of personalized DNA results affected learners’ subsequent perceptions and performance, as measured by in-camp pre- and post-tests and surveys, analysis of voluntary student talk captured by audio and video recordings, and periodic one-on-one post-camp follow-ups. The curriculum was grounded in Next Generation Science Standards (NGSS) and focused around the central question of “Who am I?” Campers approached this question via guided lessons designed to shed light on their genetic uniqueness, the many attributes of their genotype and phenotype shared with others, their more distant genetic and evolutionary ancestries, and their roles as active agents in the healthy continuation of their lives. Data relevant to these questions came from edited subsets of ancestry-informative single-nucleotide polymorphisms (SNPs) and phenotype-related SNPs from the campers’ genotype results, which their parents had received from a direct-to-consumer vendor. Our approaches to data privacy and the discovery, disclosure, and discussion of sensitive information on paternity, carrier status, and ancestry can be usefully applied and modified for many educational contexts. On the basis of our pilot implementations, we recommend additional and expanded research on how to incorporate personalized genetic ancestry information in a variety of learning contexts. The advent of readily available direct-to-consumer (DTC) DNA tests has made it possible to bring personal ancestry testing into educational contexts. DTC DNA tests have been used at the undergraduate and high school levels but not, to our knowledge, in middle school classrooms. Concerned about the lack of diversity in science, technology, engineering, and mathematics (STEM) fields, one of us (Penn State professor Nina Jablonski) and Harvard professor Henry Louis Gates, Jr. gathered a group of committed historians, artists, biologists, geneticists, anthropologists, genealogists, and educators with the goal of developing approaches to bring personalized DNA testing and genealogical investigation into informal and formal education contexts. The group believed that young learners, particularly those who have been historically marginalized in STEM classrooms and careers, would benefit from the opportunity to engage in a cross-curricular approach to learning. We offer this commentary to share our experiences with those who wish to pursue a similar approach in other settings and those who might continue efforts to make sense of the bioethical ramifications inherent in a personalized approach to teaching STEM. The U.S. faces many challenges related to the development of national scientific expertise; among these challenges are the decline in the number of youths pursuing careers in STEM disciplines and an under-representation of African Americans and Latinos in science.1National Science FoundationNational Center for Science and Engineering StatisticsWomen, Minorities, and Persons with Disabilities in Science and Engineering: 2015. National Science Foundation, 2015: 349Google Scholar The lack of diversity in STEM fields means that “we are missing critical contributors to the talent pool.”2Tabak L.A. Collins F.S. Sociology. Weaving a richer tapestry in biomedical science.Science. 2011; 333: 940-941Crossref PubMed Scopus (72) Google Scholar Findings from a study by Popejoy and Fullerton illustrate a possible connection between a lack of diversity among genomic studies and a lack of diversity in genomic research.3Popejoy A.B. Fullerton S.M. Genomics is failing on diversity.Nature. 2016; 538: 161-164Crossref PubMed Scopus (806) Google Scholar This fosters the belief that genomic research and medicine benefit only those who participate in it. Without specific attention to cultivating diversity in genomic studies, we run the risk of distancing ourselves from talented and innovative researchers who represent a broad variety of experiences and perspectives. We need to generate a curriculum that is relevant to each student. Moreover, to do this, we must not shy away from topics that might require difficult conversations about race, racism, and discrimination in all its forms (past and present). Our group set out to design and implement a two-week summer-camp curriculum (see Web Resources) that would inspire interest in STEM fields, engage students in rigorous scientific activity, and create space for student-driven research in an inclusive and supportive environment. So that we could assess the efficacy of the curriculum to accomplish these goals, we obtained both consent from caregivers and assent from students prior to participation. Caregivers and students agreed to being video and audio recorded during camp, completing pre-camp and post-camp tests and surveys during camp, completing curriculum-related materials during camp, and participating in one-on-one follow-ups periodically during the ten years following camp. None of our research examined camper DNA or related genealogical information, per se. We chose to implement the curriculum at camps for three reasons: first, families would opt in to participate in the curriculum, thereby minimizing conflict regarding the use of personal DNA; second, because neither the instructor nor the students would receive a formal performance evaluation, the stakes would be lower for both parties as they engaged in the camp; and finally, even though the camp was held in an informal learning environment, campers experienced a full day of rigorous engagement every day for two weeks; activities included completing pre- and post-tests, self-directed research, and a final presentation to a room full of families, friends, instructors, and researchers. This led us to believe that what we learned could be transferred to more formal classroom environments. In fact, the curriculum was envisioned to be co-taught across content areas in a school context. One of our primary goals was to develop a curriculum that resonates with each and every student, particularly those who have been historically marginalized in science classrooms and professions. Thus, every effort was made to include a broad representation of middle schoolers, across ethnicity, race, geography (urban versus rural), prior interest in science, learning disability, adoptee status, and foster placement. What might have been sacrificed by dataset concentration was, we believe, recouped by the feedback and stories from students who are not often well-represented in science-education research. We also made an intentional effort to have instructors who reflected the ethnic, racial, and gender diversity of our students. To that end, two instructors were African American men, one was an African American woman, one was an Asian woman, and one was a white man. In the pilot year of 2016, we had 45 total campers at two different university-sponsored camps, during which students examined the results of their personal DNA tests. Participants were recruited through the camp and project websites. More than half of the participants were girls, and 25% were students of color. Although we did not request information about economic status, we did cover all camp costs and provided scholarships for the registration fee if families stated that they needed assistance. We did not require proof of need because we felt that it was unnecessary, and we did not want to run the risk that it would deter a family from participating. In our second year (2017), we hosted 72 campers at three different sites: two university sponsored and one museum sponsored. To test the theory that a personalized approach would resonate more deeply with students, we placed 20 of the 72 campers in a “control” camp, during which these students engaged in the curriculum by investigating the DTC DNA test results and genealogical data provided by a set of preselected case studies. To increase ethnic, racial, and socioeconomic diversity, we addressed unique considerations at each site. At one, we included both residential and commuter options to make it possible for anyone within the United States (a geographical limitation of the DTC DNA test) to attend the camp. In that camp we had students from Philadelphia, Atlanta, New York City, and Alexandria, Virginia alongside campers who were local to the program. At another site, the research team partnered with a specific school that served a predominantly African American community; within this community, some students were living below the poverty line and experiencing vulnerable housing situations. Finally, researchers at the third site leveraged local relationships with schools and the community to recruit students that represented a diverse group of ethnic, racial, and socioeconomic demographics. We gave careful consideration to a broad range of bioethical concerns during the curriculum design process, and we proceeded in spite of potential controversy because we believe that middle-school-aged scientists are capable of navigating both nuanced scientific concepts and challenging questions.4Duncan R.G. Freidenreich H.B. Chinn C.A. Bausch A. Promoting middle school students’ understandings of molecular genetics.Res. Sci. Educ. 2011; 41: 147-167Crossref Scopus (22) Google Scholar, 5Freidenreich H.B. Duncan R.G. Shea N. Exploring middle school students’ understanding of three conceptual models in genetics.Int. J. Sci. Educ. 2011; 33: 2323-2349Crossref Scopus (42) Google Scholar, 6Windschitl M. Barton A.C. Rigor and equity by design: Locating a set of core teaching practices for the science education community.in: Gitomer D.H. Bell C.A. Handbook of Research on Teaching. American Educational Research Association, 2016: 1099-1158Crossref Google Scholar Although it is impossible to address every concern (e.g., can one’s genome be truly anonymous?), our decision to move forward was informed by our scholarly desire to determine the impact that including personally relevant genetic information in the curriculum had on young scholars, particularly those who have been historically marginalized in STEM classrooms and fields. Students prefer material that is personally, culturally, and contextually relevant.7Ladson-Billings G. Toward a theory of culturally relevant pedagogy.Am. Educ. Res. J. 1995; 32: 465-491Crossref Google Scholar, 8Lee C.D. Is October Brown Chinese? A cultural modeling activity system for underachieving students.Am. Educ. Res. J. 2001; 38: 97-141Crossref Scopus (255) Google Scholar Working from this perspective, we hypothesized that a personalized approach to learning about genetics and genealogy would resonate deeply with middle school students; therefore, we designed the curriculum to bring together components of genetics, genealogy, anthropology, and evolution and had our young scientists examine the overarching question “Who am I?”. Foundational to what we named the “Finding Your Roots Curriculum” was the examination of students’ own results from a commercially available DTC DNA test. We wanted the material covered to be both stimulating and personally relevant to students, and we made significant effort to consider the ways in which access to personal genetic information could impact students, parents, and educators. Others have used the results of DTC DNA testing constructively to engage undergraduate students in dialogs about genetics, ancestry, and race.9Beckwith J. Bergman K. Carson M. Doerr T. Geller L. Pierce R. Krimsky S. Martin C. Santiago M. Murray A.V. et al.Using dialogues to explore genetics, ancestry, and race.Am. Biol. Teach. 2017; 79: 525-537Crossref Scopus (8) Google Scholar Middle-school-aged youth can understand core concepts about genetic inheritance and the actions of genes.4Duncan R.G. Freidenreich H.B. Chinn C.A. Bausch A. Promoting middle school students’ understandings of molecular genetics.Res. Sci. Educ. 2011; 41: 147-167Crossref Scopus (22) Google Scholar, 5Freidenreich H.B. Duncan R.G. Shea N. Exploring middle school students’ understanding of three conceptual models in genetics.Int. J. Sci. Educ. 2011; 33: 2323-2349Crossref Scopus (42) Google Scholar Thus, we were confident that it would be possible to use information, provided by DTC DNA testing, on personal ancestry and specific phenotypic traits to productively engage middle school students with their personal ancestry and their genetic interrelatedness to one another and to ancestral humans and non-human primates. The analysis of personal DNA in a learning environment, whether formal or informal, raises ethical concerns that must be considered by educators, parents, and students prior to curriculum implementation. DTC DNA tests have the potential to reveal a wide variety of personal information that can foster student engagement, and some of this information can cause stress, confusion, and mixed emotions. The ancestry results of DTC DNA tests can be misleading or incomplete,10Royal C.D. Novembre J. Fullerton S.M. Goldstein D.B. Long J.C. Bamshad M.J. Clark A.G. Inferring genetic ancestry: Opportunities, challenges, and implications.Am. J. Hum. Genet. 2010; 86: 661-673Abstract Full Text Full Text PDF PubMed Scopus (181) Google Scholar especially for members of traditionally underrepresented minorities who might not be well-represented in comparative DNA databases. We embraced this deficiency as an opportunity to discuss with students the emerging and evolving nature of science and the importance of critically interrogating all data as scientists. We also encouraged parents and caregivers to read the DTC DNA test provider’s terms of service (TOS) carefully and make the personal choice that was best for their family. For example, one family expressed concern about access to DNA results by law enforcement, and we continue to wrestle with this concern. We offered this family the opportunity to analyze DNA from a case study, but they opted to move forward with the student’s personal DNA. We relied heavily upon establishing and maintaining open communications with families, and we relied upon the caregivers’ interaction with the TOS because we didn’t feel legally qualified to help families navigate the intricacies of the document. This falls short of the ideal and directs us to consider the implications of asking teachers and informal instructors to help families make sense of the agreement they are entering into on behalf of their minor children when instructors themselves have no legal training or expertise. There are at least three primary concerns to take into account as one attempts to reduce the risk that students learn something upsetting about themselves—or their families. These are security of personal and familial genetic data, discovery that their genetic ancestry does not match family stories or traditions, and discovery that they possess a specific genotype that might indicate an increased risk for disease. In our instructional camp contexts, the security of personal and familial genetic data was overseen by families, DTC DNA test providers, and researchers. Families were provided a voucher redeemable for a DNA test kit. The kit was delivered to the family and subsequently completed, registered, and returned by the family. The results were made available to the student’s family, who controlled login information for the DNA DTC web platform at all times. At any time, students or parents could choose not to share information (which did happen) or opt to use available case studies (which did not happen outside of the camp that used case studies exclusively). Because some companies are required by law to maintain DNA samples, a rising concern is the reality that, even if the DNA sample is deidentified, it exists and is therefore identifiable.11Brown K.V. Deleting Your Online DNA Data Is Brutally Difficult. Bloomburg, 2018Google Scholar This was not a factor during our research, but it must be considered by families when they choose to participate in this curriculum. The only way to identify known or unknown genetic family members via the DTC DNA test would be for the student’s parent or guardian to opt into the “DNA relatives” function and then make the student’s genetic information available to other “DNA relatives” on the same web platform. Families could exercise caution by having their student complete the test, receive their results, print or download copies of all relevant information, and then delete their accounts. DTC DNA test providers have policies and security measures that are meant to ensure that each individual’s data remain secure at all times. As pedagogical researchers, we protected privacy generally by anonymizing and securing any personally identifiable data. None of our research was conducted on student DNA, nor did we analyze their genetic ancestry. Before or during the camp, students could choose to opt out of using personal information by using case studies that we created for this very situation. Although none of our research involved data collection or analysis of genetic ancestry, instructors needed to be prepared to address concerns that arose when students discovered surprising or uncomfortable information. This required that instructors be willing to engage in one-on-one conversations about ancestry and its implications and be deft in identifying and respecting what a particular genetic result might mean to an individual. The frequency and depth of these conversations varied, but the willingness of the instructors to engage in them was important. During one of our camps we witnessed a student say, “The only reason I have all this European in me is because a white man raped one of my ancestors.” This was a powerful and heartbreaking moment, and this young man’s bitterness deserved to be recognized. For African Americans who are descendants of individuals brought to the United States against their will, it is a harsh reality that European ancestry might very well be the result of rape. The significance of this can be neither understated nor glossed over. Individuals hold beliefs about who they are on the basis of family stories and oral traditions within communities. The reconciliation of deeply held personal beliefs about ancestry with the results of personalized DNA ancestry testing should be respected as a protracted process of self-understanding. Instructors of middle-school-aged youth can facilitate this journey by providing clear information about facts of genetics and history.12Nelson A. Bio science: Genetic genealogy testing and the pursuit of African ancestry.Soc. Stud. Sci. 2008; 38: 759-783Crossref PubMed Scopus (182) Google Scholar, 13Nelson A. The Social Life of DNA: Race, Reparations, and Reconciliation after the Genome. Beacon Press, 2016Google Scholar In selecting the phenotypic traits and characteristics that would be included in the curriculum (Table 1), we struck a compromise between traits that we initially viewed as being innocuous (e.g., typical and potentially boring to middle schoolers) and provocative (e.g., novel and potentially controversial). We included traits and characteristics such as hair and eye color, caffeine metabolism, lactose intolerance, earwax consistency, and likelihood of freckling because we believed them to be mundane, but we forgot that even young children have strongly held beliefs about “good hair” and “bad hair.”14Johnson T.A. Bankhead T. Hair it is: Examining the experiences of Black women with natural hair.Open Journal of Social Sciences. 2014; 2: 86-100Crossref Google Scholar These traits elicited questions and conversations about genotype and phenotype as well as probability versus likelihood, and they provided ample latitude for humor and exchange of information with other students.Table 1Ancestry and Phenotypic Traits Studied by the Middle-School-Aged Learners Participating in this StudyTraitRationale for Inclusionmitochondrial ancestryMitochondrial markers indicate the geographic ancestry of the student’s maternal line.Y chromosome ancestryY chromosome markers indicate the geographic ancestry of the male student’s paternal line.autosomal ancestry with AIMs and autosomal ancestry without AIMsAutosomal ancestry markers include genetic information that has been passed on from the student’s parents, grandparents, great-grandparents, and so on. Although there is no way to tell which piece of genetic information was passed down from which relative (without testing all of one’s relatives), students benefit from seeing the geographic connections associated with these markers.eye color; iris patterns (crypts, furrows, rings); hair color, curl, and thickness; colorblindness; earwax type, and heightEye color and patterns, hair color, thickness, and curl, colorblindness, earwax type, and height are heritable traits that offer a safe, entry-level opportunity to talk about the connection between genotype and phenotype, giving students an opportunity to make an assertion about the movement of those genes from generation to generation.muscle performanceAlpha-actinin-3 encodes a protein that plays a role in skeletal muscles. This particular trait might resonate with students who have personal experience with their reactions to running short and/or long distances (e.g., are you a better sprinter, or are you in it for the long haul?).bitter taste perception and odor detectionBitter taste perception, as well as odor perception, are heritable traits that offer safe entry into a discussion about traits that might, though not necessarily, increase an organism’s survival (“DON’T EAT THAT”) to reproductive age and how this increased chance of survival could allow an organism to pass on the trait.lactose intolerance and caffeine metabolismLactose intolerance and caffeine metabolism are two traits that give students the opportunity to think about the connection between personal diet choices and what might be bad, good, or better for their physiology.malaria resistanceMalaria resistance (the Duffy marker) provides an opportunity to discuss traits that get passed on even in populations where the trait offers no or unknown significant benefit or increase in survival to reproductive age.HDL (good cholesterol)Like lactose intolerance and caffeine metabolism, the HDL (good cholesterol) marker opens up a conversation with students about the connection between personal diet and exercise choices and what might be bad, good, or better for their physiology. Note: this is not a discussion about weight.skin colorSkin color is, most likely, the most challenging of the traits that we propose to explore. That said, honest discussion about the social construction of race as a function of skin color, in the context of understanding that biologists argue that there is no such thing as a genetic “race,” could help students think about their beliefs about skin color as a function of genetics and as a social construct.The abbreviation AIM = ancestry-informative marker. Open table in a new tab The abbreviation AIM = ancestry-informative marker. Adolescents face many challenges in accessing and adopting healthy behaviors.15World Health OrganizationGlobal Accelerated Action for the Health of Adolescents (AA-HA!): Guidance to Support Country Implementation. World Health Organization, 2017: 176Google Scholar We included health and wellness traits that would not target stereotypes or place a spotlight on specific students but, rather, would empower students both to make sense of what they have no, some, or much control over and to use that information to make informed decisions. Students don’t have control of their genetic makeup, and they have very little control over the genealogical and sociocultural context in which they are raised. Conversely, they do have the ability to use information about caffeine metabolism, for example, to make a decision about whether or not to have a cola before bedtime. Our goal was to develop a curriculum, anchored to Next Generation Science Standards (NGSS), that would build upon the work that teachers and students are already doing. The curriculum is malleable in that it can be taught in its entirety by a single instructor or by a team and in a single classroom or across a school. It is designed to let teachers and their students make decisions based upon the needs of the classroom, whether it’s taught in a 7th grade life science class or a 10th grade Advanced Placement biology class. We also designed the Finding Your Roots Curriculum to inspire teachers and students to think about relatedness in broad and inclusive ways, to encourage students to create durable records of oral and written family history, and to share pieces of who they are with each other. We wanted to affirm, in the context of a science camp, that families and all human social units are more than just about genetic relatedness. To that end, we used language to guide students who are knowingly being raised by someone other than their biological parents to think about the genealogical experiences of their caregivers and their biological and everyday families. We sought to create a space where young scholars could cultivate a greater interest in science as well as a self-identity as scientists. Initial findings indicate that students acquired knowledge without regard to the use of personal data but reported that they preferred to learn about themselves rather than others. At all sites, students were engaged and curious and asked pointed, thought-provoking questions. They disagreed with each other and challenged claims and assumptions by making their own claims supported by new evidence. They developed hypotheses and research protocols. Beyond camp, our young scholars have reported in follow-up interviews and surveys that they have taken what they learned and have used it to teach the next generation of young scientists in learning contexts back at home or taken up leadership roles in their science classrooms. Young women campers have advocated for themselves through the design and proposal of independent science studies and have shown a desire to serve as science camp counselors. The material is not only personally relevant but also worthy of sharing with others. Teachers want to develop material that is personally relevant to their students, especially those who might not share life experiences in common with them. Teachers are under considerable pressure to meet the demands of increasingly diverse classrooms with diverse learning needs and limited resources and support. They don’t always have the luxury of devoting class time to getting to know their students deeply and meaningfully because both teacher and student performance is often assessed only by the attainment of standardized benchmarks and outcomes. These considerations can preclude teachers and students from genuinely connecting with one another. Our curriculum, although it remains anchored to NGSS, embeds valuable moments capable of fostering deeper interpersonal connections and promoting empathy by inviting students to share pieces of themselves with their teachers and peers. Our curriculum also explicitly invites discussion of human physical and biological diversity and the nature of concepts of race. By comparing skin-color phenotypes and some of the gene variants associated with skin color, students readily recognized the continuous nature of skin-color variation. Guided instruction about the influence of natural selection on skin color facilitated students’ learning of physical traits that are substantially shaped by natural selection. Ethnic and racial identity are developed over time,16Phinney J.S. When we talk about American ethnic groups, what do we mean?.Am. Psychol. 1996; 51: 918-927Crossref Scopus (771) Google Scholar so creating time and space for adolescents to identify and assess what these pieces mean was built into the curriculum. Discussions among students and instructors encouraged students to examine the biological reality of skin color and disrupt the historical framing of skin color as an indicator of value or worth. These discussions made it possible for students to share personal experiences and challenges of identity with one another. And although it is not the responsibility of students of color to teach their peers what it means to be non-white in today’s world, we designed the curriculum to invite students of all backgrounds to share who they are, authentically and wholly, and to promote solidarity. We are now working toward implementing this curriculum in more and varied informal and formal educational contexts. One of our long-term goals is the development of a year-long, cross-curricular, formal classroom approach in which students and multiple instructors navigate the curriculum over a full academic year. Simultaneously, we need to continue to consider how to best prepare teachers to engage in this work. How can teachers feel prepared to navigate challenging conversations, how can teachers be sure that families are fully aware of the risks, and how can teachers present both personal and case studies fluidly so there is no stigma associated with preference of one over the other? We have seen the power of the curriculum and want to make sure that it is presented to students with attentive and compassionate instruction because this approach will ameliorate many ethical concerns about the interpretation of ancestry and phenotypic information. Engaged instructors can mitigate the risk and elevate learning outcomes. The initial development of this curriculum began in meetings convened at the W.E.B. Dubois Center of Harvard University by Henry Louis Gates, Jr. and at the National Evolutionary Synthesis Center (NESCent) by Nina G. Jablonski. Financial support for further development of the curriculum came from the Robert Wood Johnson Foundation award 72663, the Rockefeller Foundation award 2015 PRE 310, The Pennsylvania State University College of Liberal Arts Dean’s Fund, and the Hutchins Institute for African and African American Studies at Harvard University. Jennifer Wagner’s contributions were supported by grant no. R00HG006446 from the National Human Genome Research Institute (NHGRI). We are grateful to the members of the Genetics and Genealogy Working Group for their past and ongoing contributions to curriculum development. We thank the directors of the 2016 and 2017 science summer camps where research on the curriculum implementations was carried out for their contributions and for making their expert staff available. They are Michael Zeman and Jessica Kim-Schmidt (Penn State Science U), Bert Ely (University of South Carolina), and Preeti Gupta (the American Museum of Natural History). Full Curriculum, Including Connections to Next Generation Science Standards and English Language Arts Standards, www.fyrclassroom.org." @default.
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W2914698748 title "Practical and Ethical Considerations of Using Personal DNA Tests with Middle-School-Aged Learners" @default.
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