Happy Holidays to you and yours from the AFB Public Policy Center. Please enjoy this latest edition of the AFB Research Navigator! View this email in your browser<http://mailchi.mp/afb/o-come-and-be-counted-censuses-surveys-rights-and-responsibilities?e=2094bc8783> [American Foundation for the Blind logo: Expanding possibilities for people with vision loss. AFB DirectConnect - 1401 South Clark Street, Suite 730, Arlington, VA 22202; Tel 202.469.6831; www.afb.org] O Come and Be Counted! - Censuses, Surveys, Rights, and Responsibilities Read this edition of the Research Navigator online at the following link: http://www.afb.org/info/programs-and-services/public-policy-center/research-navigator-a-quarterly-series-on-research-in-blindness-and-visual-impairment/o-come-and-be-counted-censuses-surveys-rights-and-responsibilities/1235<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=c50282ba18&e=2094bc8783> Counting people is nothing new. Perhaps some of the earliest organized research in the history of the world occurred through censuses. According to the Republic of Ireland's census office, the first known census was undertaken by the Babylonians in 3800 BC - that's almost 6,000 years ago (Central Statistics Office, 2016)! This time of year, Christians celebrate a nativity story which includes the ancient Roman registration of citizens, and many faiths include stories and historical records of populations being counted for purposes ranging from crop production and social services to taxation and persecution. So, what is so important about counting people? Things have certainly changed in 6,000 years - is it still important for citizens to be counted? And what have we learned about protecting people's rights and personal information so that we can still conduct censuses, surveys, and research without putting people at risk? This edition of the Research Navigator is the first in a two-part special addressing these questions as well as current concerns about the upcoming U.S. Decennial Census in 2020. In Part One, we'll cover: * Censuses, Surveys, Research - What's the difference? * Your Rights and Responsibilities as a Census Responder and Research Participant In January, we'll continue with Part Two, including: * The Problem with Bad Data - When Censuses Go Wrong * Preparations and Concerns for the 2020 Census * Censuses, Surveys and People with Vision Loss About This Series Welcome to the 12th edition of AFB's Research Navigator<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=8ef8027cb7&e=2094bc8783>. This is a quarterly series - accompanying AFB's DirectConnect newsletter <https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=da9daecccc&e=2094bc8783> - from the AFB Public Policy Center<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=932f7ee6d9&e=2094bc8783>. Read past issues of the Research Navigator online at the following link: www.afb.org/navigator<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=397fd18f56&e=2094bc8783> Read past issue of the DirectConnect newsletter online at the following link: www.afb.org/dc<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=1f089dc36e&e=2094bc8783> Visit the AFB Public Policy Center online at the following link: www.afb.org/policy<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=0e7c9cb559&e=2094bc8783> The purpose of this series is to keep you informed of user-friendly facts and figures and the latest research pertaining to people with vision loss. The series will also include the necessary background information so you may use the information most accurately. Have an idea for a Research Navigator topic? Want to know more about a statistic or line of research? Send your thoughts to AFB's Senior Policy Researcher, Rebecca Sheffield<mailto:rsheffield@afb.net>, rsheffield@afb.net<mailto:rsheffield@afb.net>. Readers are also encouraged to check out AFB's Statistical Snapshots<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=1cf1839cd6&e=2094bc8783> at the following link: www.afb.org/stats<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=8208c24f20&e=2094bc8783> This webpage is regularly updated with a wide variety of information and tools that address commonly asked questions about people with vision loss. Censuses, Surveys, Research - What's the Difference? [collage of random numbers]The word census comes from the Latin word censere, which mean to assess or appraise and is related to the word censor ("census," 2017). Roman censors were officials in charge of registering citizens, including deregistering persons with bad behavior ("censor," 2017). Interestingly, the Babylonian census we referred to earlier (in 3800 BC) was an attempt every 6 or 7 years to count not just the Babylonian people, but also livestock, butter, honey, milk, wool, and vegetables (Central Statistics Office, 2016)! However, in most modern uses, a census means an actual count of a population, and a population means every single object, person, or other item of interest that has certain characteristics (Kiess, 1996). The U.S. Decennial Census program is an effort to count every person in the United States once every 10 years. Information from the U.S. Census is used to organize resources and congressional districts and to understand and adapt to population changes. The purpose of the American Printing House for the Blind's Federal Quota Census is "to register students in the United States and Outlying Areas who meet the definition of blindness and are therefore eligible for adapted educational materials from APH through the Act to Promote the Education of the Blind" (American Printing House for the Blind, n.d.). Similarly, the annual Deaf-Blind Census from the National Consortium on Deaf-Blindness includes a comprehensive child count and additional data for all children ages birth through 21 who have been identified as deafblind, including those with additional disabilities (National Center on Deaf-Blindness, n.d.). Unlike a census, a survey is a research tool which uses pre-defined questions to gather information orally or in writing from a sample of people (Teddlie & Tashakkori, 2009b). A sample is a subset of a larger population (Kiess, 1996). Depending on who is in the sample, samples can be more or less representative of a population. Researchers use a variety of methods to make educated assumptions about the entire population based on what they learn from the sample. Working with samples rather than entire populations greatly reduces the amount of time and effort that the researchers spend collecting data. Samples can be chosen through a variety of strategies depending on the time and resources available and the goals of the research: * Accidental or convenience sampling is one of the simplest strategies - researchers simply reach out to those who are easily available to participate in a study (Teddlie & Tashakkori, 2009a). "Man on the street" interviews are a good example of convenience sampling. * Purposive sampling occurs when researchers intentionally seek people who are likely to have information of interest - for example, going to a senior center in search of survey participants over age 65, or sending a survey via email to a list of known experts on a topic. Snowball sampling is a type of purposive sampling where you survey one person and then ask him/her to refer you to someone else who meets your criteria (Teddlie & Tashakkori, 2009a). * Random sampling is preferred by many researchers because it reduces the chances of bias in the selection of people in the sample. Simple random sampling occurs when the researcher selects participants at random from the entire population, with everyone in the population having an equal chance of being selected. Often, researchers have challenges gathering a truly random sample because they do not have access to the entire population, and they certainly cannot force everyone they select to participate (Teddlie & Tashakkori, 2009a). The U.S. Census Bureau, which oversees our national Census every 10 years, also conducts the annual American Community Survey (ACS). The ACS is sent to a random sample of about one in 38 U.S. households (3,527,047 home addresses and 206,415 group quarters residents in 2016). Because some addresses are vacant and some of those selected do not participate, the final number of households surveyed is less than the number in the original sample (2,2229,872 housing units and 160,572 people living in group quarters participated in 2016) (U.S. Census Bureau, 2017c). The American Community Survey is longer than the Decennial Census form and thus helps generate estimates about many more characteristics of the U.S. population, enabling decision-making about employment, education, veterans, income and housing costs, commuting, disability and health insurance, housing needs, and more. Like Decennial Census data, de-identified data and population estimates from the ACS are made available for free via the internet - enabling private businesses, nonprofit organizations, university researchers, and others to use the information to inform countless decisions and investigations (check out American FactFinder<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=55c0bd4def&e=2094bc8783> to peruse this data yourself!). Besides surveys, there are other types of research that include samples of participants - from studies to test the effectiveness of medicines or educational strategies, to interviews and focus groups involving open-ended discussions, to embedded ethnographic research where researchers live in communities, sometimes for years, to better understand people's lived experiences. Whenever human beings are needed as participants, then researchers must consider not only sampling issues, but also important concerns of participant rights and research ethics. Your Rights and Responsibilities as a Census Responder Given rising concerns about data privacy and identity theft, everyone should think critically before sharing identifiable or personal information with a researcher or organization. You should consider how your information will be used and how your identity will be protected. [Three casual people standing in a line and holding question markets isolated on white background]If you are selected to participate in a government survey like the ACS, or when you receive the 2020 Census form, you might ask, "Why am I being asked this? What will happen if I refuse to participate? If I participate, who will have access to my contact information and/or identifiable information about me?" You should also ask similar questions before participating in surveys or studies conducted by researchers, public opinion pollsters, or other programs. Census Responders' responsibilities With regards to the Census, the Constitution of the United States, Article 1, Section 2, provides the authority for the government to count the population: "Representatives and direct taxes shall be apportioned among the several states which may be included within this Union, according to their respective numbers... The actual enumeration shall be made within... every subsequent term of ten years, in such manner as [Congress] shall by law direct." Federal courts have established that Congress is not prohibited from gathering additional statistics alongside its headcount of the population, "if 'necessary and proper,' for the intelligent exercise of other powers enumerated in the Constitution, and in such case, there could be no objection to acquiring this information through the same machinery by which the population is enumerated" United States v. Moriarity, 106 F. 886, 891 (S.D.N.Y.1901). In short - yes, you do have to participate in the Census. Title 13 of the U.S. Code, in conjunction with the Sentencing Reform Act of 1984, establishes fines of $5,000 or more for refusing to complete the Census or deliberately answering falsely. That said, people are rarely prosecuted for not responding (Selby, 2014). Ideally, Americans will view Census participation as a civic responsibility, like jury duty, through which our country counts what it values and values what it counts! Obviously, if people were allowed to choose not to participate, then the Census could not be an accurate count of the U.S. population. The American Community Survey is part of the U.S. Census program (having evolved from what used to be the long-form version of the Decennial Census) and is therefore mandatory based upon the same legal principles compelling participation in the Decennial Census (Title 18 U.S.C. Section 3571 and 3559). Non-participation from households that are randomly selected to participate in the ACS reduces the true "randomness" of the ACS sample and thus increases the chances that ACS estimates are inaccurate assumptions about the U.S. population. ACS statisticians predict that if the ACS were voluntary instead of mandatory, response rates would reduce significantly and an additional $90 million would have to be spent annually on in-person follow up surveys to make up for inaccuracies caused by non-random sampling (U.S. Census Bureau, 2017b). For an excellent discussion of this topic, see the Census Bureau webpage <https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=299db43a54&e=2094bc8783> at the following link: https://www.census.gov/programs-surveys/acs/methodology/mandatory-voluntary-methods.html<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=da9737cc19&e=2094bc8783> Researchers in the field of blindness and visual impairments rely heavily on the participation of people with vision loss in the ACS and Decennial Census, and we work closely with the Census Bureau's researchers to encourage them to make their data collection processes as accessible as possible (including via telephone and in-person interviews). Most previous editions of the Research Navigator<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=3cb6bd6daf&e=2094bc8783> have included Census Bureau data. The Census Bureau provides one of the only consistent, nationwide sources of information about the lives of people who self-identify as having serious trouble seeing. The Census Bureau helps to conduct other voluntary surveys, such as the Current Population Survey for the Bureau of Labor Statistics and the National Health Interview Survey for the Centers for Disease Control and Prevention. Participation from people with vision loss in these surveys is also incredibly valuable to researchers working to understand trends in employment, health, and other factors. Census responders' rights civic responsibility to participate in the Census and ACS, the Census Bureau also has serious responsibilities to protect your rights and privacy. They will never ask for your Social Security number, money, donations, or credit card information and will never ask you to submit information via email. Employees of the Census Bureau who sometimes visit homes when collecting ACS data will always have official identification from the Bureau. The following is the Census Bureau's recently revised statistical confidentiality pledge: "The U.S. Census Bureau is required by law to protect your information. The Census Bureau is not permitted to publicly release your responses in a way that could identify you. Per the Federal Cybersecurity En5, your data are protected from cybersecurity risks through screening of the systems that transmit your data" (U.S. Census Bureau, 2017a). Employees of the Census Bureau must sign affidavits constituting a lifetime obligation of nondisclosure; violating a respondent's confidentiality is a federal crime with penalties including a federal prison sentence of up to five years and/or a fine of up to $250,000. The Census Bureau cannot even release personally identifiable records to the IRS, FBI, or CIA! To read about the Bureau's privacy principles, statistical safeguards, and data stewardship processes, visit the Census Bureau webpages on data privacy <https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=3881cc5a48&e=2094bc8783> at the following link: https://www.census.gov/about/policies/privacy/data_protection.html<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=6c5c81a975&e=2094bc8783> Your Rights as a Research Participant Aside from the Census, ACS, and income taxes, there are very few other statistical programs or data collection efforts in which Americans are required to participate. Participation as a subject in academic or scientific research, whether for medical, business, technology, or social studies, should always be voluntary. In many situations, a special set of rules protects your rights as a potential research participant. For these rules to apply, the following conditions must be met: * The research is to inform general knowledge - for example, the authors intend to publish in an academic journal for other researchers and professionals, or researchers are seeking to answer a question to solve a problem impacting the world. A survey conducted by an employer to determine which days of the week employees prefer having staff meetings would not meet this requirement. * Participants in the research must be living human beings. Research conducted on donated organs or tissue is not protected in the same way as research with human subjects. * Usually, the research must involve identifiable information about participants. This occurs when there is any knowledge or record connecting you with the research, including a researcher who sees you face-to-face or knows your phone number. Even prisoners have the right to refuse to participate in research, and parents/legal guardians must always be asked to consent to participation of their children in research. Researchers must provide participants with information about the study in a format that is accessible and easy to understand. These rules are outlined and enforced through policy known as the Common Rule, which governs funding of research in 15 different federal agencies (U.S. Department of Health and Human Services Office for Human Research Protections, 2016). However, even if the research is not federally funded, if researchers do not follow these rules, then they usually cannot publish their research in academic journals. Typically, researchers must have their research with human subjects pre-approved by a federally-authorized Institutional Review Board (IRB) which can document that the research proposed meets with rules and ethical standards. If researchers or IRBs are found to be violating these rules, they can be subjected to stiff penalties depending on the nature of the violation. Additionally, the Family Educational Rights and Privacy Act (FERPA) and the Health Insurance Portability and Accountability Act (HIPPA) set standards for the protection of educational information (for elementary, secondary, and post-secondary students) and protected health information. Furthermore, professionals in the field of blindness and visual impairment who are members of the Association for Education and Rehabilitation of the Blind and Visually Impaired (AER) hold to a code of ethics which includes ethical standards for research and publication. These include: 11.01 When conducting research every effort will be made to fully inform the participant of the risks of participation and their ability to withdraw at any time without consequences. 11.02 When conducting research, every effort will be made to protect the confidentiality of the participant, and to obtain informed consent to have their information used for research purposes. 11.03 When conducting research AER Members will follow IRB standards that protect research participants.... 11.05 AER members conducting research will insure that participants understand that participation is voluntary and without any penalty for participation, refusal to participate, or opinions expressed. 11.06 After data are collected, AER Members will provide participants with full clarification of the nature of the study to remove any misconceptions. Where scientific or human values justify delaying or withholding information, AER Members will take reasonable measures to avoid causing harm. (Association for the Education and Rehabiltiation of the Blind and Visually Impaired, 2015) Here are some good questions to ask when deciding whether or not to participate in a survey or other type of research (remember, you can always say "no thanks!"): 1. What are known and potential costs and risks of participating ? Is there even a remote chance that personally information about you could be shared with others without your permission, and if so, could that put you at risk for embarrassment, scams, retribution, or liability? What steps will be taken to reduce these risks. How much of your time will be involved, and if you must travel to a research site, will you be reimbursed? 2. Will you be compensated and/or are there benefits that outweigh the potential costs or risks? Are the researchers offering an incentive to participate? Is there an opportunity for the researcher to learn something important that could improve your life or the lives of others? 3. What will happen if you change your mind and do not want to participate? An ethical researcher should always make sure you are free to stop participating at any time, though it is understandable that you may not receive the entire advertised reimbursement or incentive if you withdraw from the study. Students should never be penalized or lose out on academic instruction because they or their parents/guardians have not consented to participate in research, and college students should not be unduly pressured to take part in research to fulfill a course requirement. 4. Who can I talk to if I have questions now or during or after the research? Where will I be able to access the results of this study? Beware of research that is conducted "about people" but that does not include the participants of the research as audience members when presenting results. As a potential research participant, you hold all the cards! A researcher who does not value participants and does not treat them with respect is probably not worthy of your time and effort. Next time... Given what we have covered about the Census and research and the implications for participants, what are the national implications of the Census? How are modern research methods impacting data collection, and what will be new with the next Decennial Census in 2020? Why should we care? Stay tuned in January for part 2 of this Research Navigator series, where we will consider the impact of funding and other policy decisions on the quality and usability of our national datasets. Until then, Happy Holidays! [wreath with pinecones and red ornaments] References American Printing House for the Blind. (n.d.). APH field services and Federal Quota info. Retrieved from http://www.aph.org/advisory/#federal-quota- reference<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=5f8cd10ff6&e=2094bc8783> Association for the Education and Rehabiltiation of the Blind and Visually Impaired. (2015). Code of Ethics of the Association for Education and Rehabilitation of the Blind and Visually Impaired: A Guide for Professionals . Alexandria, VA. Retrieved from https://aerbvi.org/about/<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=b60c07e7e1&e=2094bc8783> censor. (2017). Retrieved from https://www.merriam- webster.com/dictionary/censor#h1<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=6cc1eff7c8&e=2094bc8783> census. (2017). Retrieved from https://www.merriam- webster.com/dictionary/census<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=3ea1c0f401&e=2094bc8783> Central Statistics Office. (2016). The census through history. Retrieved from http://census.ie/in-history/the- census-through-history/<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=e44ed20430&e=2094bc8783> Kiess, H. O. (1996). Statistical concepts for the behavioral sciences (2nd ed.). Needham Heights, MA: Allyn and Bacon. National Center on Deaf-Blindness. (n.d.). Why a National Child Count. Retrieved from https://nationaldb.org/pages/show/why-a-national-child-count Selby, W. G. (2014). Americans must answer U.S. Census Bureau survey by law, though agency hasn't prosecuted since 1970. Retrieved from http://www.politifact.com/texas/statements/2014/jan/09/us-census-bureau/americans-must-answer-us-census-bureau-survey-law-/<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=8fc8876380&e=2094bc8783> Teddlie, C., & Tashakkori, A. (2009a). Sampling strategies for mixed methods research. In Foundations of Mixed Methods Research (pp. 168-196). Thousand Oaks, CA: SAGE Publications. Teddlie, C., & Tashakkori, A. (2009b). The fundamentals of mixed methods research. In Foundations of Mixed Methods Research (pp. 19-39). Thousand Oaks, CA: SAGE Publications. U.S. Census Bureau. (2017a). Data protection. Retrieved from https://www.census.gov/about/policies/ privacy/data_protection.html<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=f45f83956e&e=2094bc8783> U.S. Census Bureau. (2017b). Mandatory vs. voluntary methods. Retrieved from https://www.census.gov/programs-surveys/acs/methodology/mandatory-voluntary-methods.html<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=f7ca2ef7d1&e=2094bc8783> U.S. Census Bureau. (2017c). Sample size and data quality. Retrieved from https://www.census.gov/acs/www/methodology/sample-size-and-data-quality/<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=54d1bb9ada&e=2094bc8783> U.S. Department of Health and Human Services Office for Human Research Protections. (2016). Federal policy for the protection of human subjects ('Common Rule'). Retrieved from https://www.hhs.gov/ohrp/regulations-and-policy/regulations/common-rule/index.html<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=9213eb46e4&e=2094bc8783> [https://cdn-images.mailchimp.com/icons/social-block-v2/color-facebook-48.png]<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=015c60e233&e=2094bc8783> [https://cdn-images.mailchimp.com/icons/social-block-v2/color-link-48.png]<https://afb.us11.list-manage.com/track/click?u=bd3c8fefc9f905f5ccf41c577&id=6da1783091&e=2094bc8783>