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Curated

ABC News Genetic Engineering Poll, April 1990 (ICPSR 9458)

Released/updated on: 2006-11-28
Geographic coverage: United States
Time period: 1990-04-26--1990-05-06
This survey centers on issues relating to genetic engineering. Respondents were asked if they would consider having a child by artificial insemination, and if so, how important it would be to know the medical, genetic, and social background of the sperm donor. They were also asked if they would consider ending a pregnancy if genetic tests showed any of a number of traits or problems in the fetus. Additionally, respondents were asked if employers should have the right to demand genetic testing before hiring, if insurance companies would be justified in refusing to insure people whose genetic tests indicated the likelihood of serious disease, and if they would consider changing a child's inherited characteristics by changing the child's genetic structure in the womb. Background information on respondents includes education, age, religion, marital status, sex, race, state/region, and if the respondent had children.
Curated

Building Patient-Centered Outcomes Research Value and Integrity with Data Quality and Transparency Standards [Methods Study], United States, 2013 - 2018 (ICPSR 39529)

Released/updated on: 2025-10-22
Geographic coverage: United States
Time period: 2013-01-01--2018-01-01

Many healthcare systems use electronic health records. Researchers use data from these records in their studies. Some records have missing or incorrect data. When this happens, people might not be able to trust a study's results. The research team wanted to:

  • Create guidance to judge whether data that a study used were high quality
  • Find new ways to display the quality of data
  • Learn why researchers don't always report the quality of data that they used in studies

To access the methods and software, please visit the DQCODE-A-Thon GitHub.

Curated

CBS News Monthly Poll #2, January 1998 (ICPSR 2452)

Released/updated on: 2011-02-08
Geographic coverage: United States
This poll, conducted, January 13, 1998, is part of a continuing series of monthly surveys that solicit public opinion on the presidency and on a range of other political and social issues. This particular poll focused on the recent Scottish scientists' cloning of a sheep named "Dolly". Respondents were asked for their opinions on the cloning of animals, the cloning of human beings, whether the federal government should outlaw cloning, and American physicist Richard Seed's expressed desire to experiment with the cloning of humans. Those queried were asked if they would like to clone themselves. In addition, respondents were asked which of the following celebrities they felt were worthy of cloning: basketball star Michael Jordan, Pope John Paul II, singer Frank Sinatra, First Lady Hillary Clinton, comedian Jerry Seinfeld, talk show host Oprah Winfrey, comedian Johnny Carson, actor Jack Nicholson, Reverend Jesse Jackson, and talk show host Kathie Lee Gifford. Background variables on respondents include age, race, ethnicity, education, family income, political party, political orientation, religion, sex, and age of children in household.
Curated

CBS News Monthly Poll #3, March 2005 (ICPSR 4323)

Released/updated on: 2006-07-27
Geographic coverage: United States
This special topic poll is a part of a continuing series of monthly surveys that solicit public opinion on the presidency and on a range of other political and social issues. Respondents were asked to give their opinions about the most important problems facing this country, abortion, who should have the ultimate decision about a feeding tube of a patient in a vegetative state, the Terri Schiavo case, the Schiavo case being sent to the United States Supreme Court, congressional and presidential involvement in the Schiavo case, government decisions on life support issues, reasons the Schiavo bill was passed, future involvement of Congress in the lives of United States citizens, and physician assisted suicide. Respondents were also asked their opinions about the president's handling of his job, the economy, and the situation in Iraq, as well as Congress's handling of its job. Other questions inquired about the respondents' following of the Schiavo case, the degree of the respondents' feelings toward issues related to the Schiavo case, their possession of a living will, respondents' religious service attendance, and views of themselves as evangelical Christians. Background information includes political party affiliation, political philosophy, voter registration status, which candidates they voted for in the 2004 presidential election, religion, age, race, education, marital status, income, and whether the respondents were parents.
Curated

Demonstrating Respect and Acceptable Consent Strategies: What Matters to Patients in Patient-Centered Outcomes Research (PCOR)? [Methods Study], United States, 2017 (ICPSR 39575)

Released/updated on: 2025-11-17
Geographic coverage: United States

Before people can join a research study, they need to provide informed consent. Informed consent is a process that helps people know

  • What a study is about
  • What will happen in the study
  • The benefits and risks people may experience
  • That they have a choice whether to join the study

Getting informed consent can take a long time, and people may not understand all the details. Researchers want to know what patients think about having short or longer discussions with doctors for studies with low risk. Low risk means the study's risks are no greater than those in daily life or from usual health care. In this study, the research team compared people's views about a shorter consent discussion for a study on blood pressure with the usual, longer discussion.

Curated

Euro-barometer 39.1: Energy Policies, Biotechnology, and Genetic Engineering, May-June 1993 (ICPSR 6196)

Released/updated on: 1996-12-10
Geographic coverage: Europe, United Kingdom, Portugal, Global, Spain, Greece, Netherlands, Belgium, Luxembourg, Ireland, Denmark, Italy, France, Germany
Time period: 1993-05-01--1993-06-01
This round of Euro-Barometer surveys queried respondents on standard Euro-Barometer measures such as public awareness of and attitudes toward the Common Market and the European Community (EC), and also focused on biotechnology, genetic engineering, and energy policies. Respondents were questioned about their opinions regarding the application of biotechnology and genetic engineering to humans, animals, and plants. Opinions were also gathered on the need for ethical rules for the application of biotechnology, the use of biotechnology for changing hereditary characteristics, the need to balance animal and human welfare, the effectiveness of traditional breeding methods compared to genetic engineering, protection of the environment, and the influence of people and groups on the development of biotechnology. Energy-related topics covered the efficiency of public bodies in acting to conserve energy, the responsibility for energy investment decisions, the importance of stable energy prices, reliable energy supplies, and low pollution risks, and proposals to increase taxes on energy consumption and on packaging that pollutes the environment. In addition, respondents were queried about their satisfaction with their current housing, the area in which they lived, and the travel time from home to work. Respondent willingness to move in order to find or change jobs and their reasons for moving or not moving were also probed. On EC matters, respondents were asked about their satisfaction with and expectations for product purchases in other EC countries, whether national institutions of the relevant EC country or EC institutions were better able to solve potential buying or selling problems with other EC member states, and whether the respondent lived within 30 kilometres of another EC country. Demographic and other background information was gathered on number of people residing in the home, size of locality, home ownership, trade union membership, region of residence, and occupation of the head of household, as well as the respondent's age, sex, marital status, education, occupation, work sector, religiosity, subjective social class, left-right political self-placement, and opinion leadership.
Curated
Simple Crosstabs

Eurobarometer 73.1: The European Parliament, Biotechnology, and Science and Technology, January-February 2010 (ICPSR 31483)

Released/updated on: 2013-02-14
Geographic coverage: Cyprus, Portugal, Iceland, Global, Malta, Greece, Netherlands, Sweden, Austria, Latvia, Luxembourg, Ireland, Poland, Slovenia, Slovakia, France, Bulgaria, Lithuania, Croatia, Romania, Hungary, Europe, United Kingdom, Switzerland, Spain, Czech Republic, Turkey, Belgium, Norway, Finland, Denmark, Italy, Germany, Estonia
Time period: 2010-01-29--2010-02-25

The Eurobarometer series is a unique cross-national and cross-temporal survey program conducted on behalf of the European Commission. These surveys regularly monitor public opinion in the European Union (EU) member countries and consist of standard modules and special topic modules. The standard modules address attitudes towards European unification, institutions and policies, measurements for general socio-political orientations, as well as respondent and household demographics. The special topic modules address such topics as agriculture, education, natural environment and resources, public health, public safety and crime, and science and technology.

This round of Eurobarometer surveys covers: (1) knowledge, opinions of, policies, and values of the European Parliament (EP); (2) biotechnology; (3) science and technology. Technology questions pertain to knowledge, opinions, and effects of genetically modified food, nanotechnology, animal clothing, synthetic biology, and biobanks emerging in the next 20 years, as well as opinions on regenerative medicine, including stem cell research, resistance genes, bio-fuels, and global warming. Other questions address interest in, knowledge of, and engagement with science and technology, collaborative research across Europe funded by the EU, level of EU investment in research, young people's interest in science, and women's representation in scientific professions.

Demographic and other background information collected includes age, gender, nationality, marital status, age when stopped full-time education, occupation, left-right political self-placement, political party attachment, household composition, religious affiliation and participation, ownership of a fixed or a mobile telephone and other durable goods, difficulties paying bills, level in society, and Internet use. In addition, country-specific data includes type and size of locality, region of residence, and language of interview (select countries).

Curated
Partially restricted

Health Tracking Physician Survey, 2008 [United States] (ICPSR 27202)

Released/updated on: 2010-08-17
Geographic coverage: United States
The 2008 Health Tracking Physician Survey (HTPS) is the successor to the Community Tracking Study (CTS) Physician Surveys which were conducted in 1996-1997 (ICPSR 2597), 1998-1999 (ICPSR 3267), 2000-2001 (ICPSR 3820), and 2004-2005 (ICPSR 4584). Unlike the previous surveys, HTPS does not have the community focus intrinsic to CTS. Whereas the CTS design focused on 60 nationally representative communities with sample sizes large enough to draw conclusions about health system change in 12 communities, the HTPS design is a national sample not aimed at measuring change within communities. Hence, "Community" was dropped from the study title. Administered to a nationally representative sample of United States physicians providing direct patient care, HTPS collected information on physician characteristics and specialty distribution; career satisfaction; practice arrangements and ownership; financial interest in medical equipment and hospitals; and physician time allocation, including hours worked, number of office visits, time spent communicating with patients via e-mail and telephone, and provision of charity care. The survey also collected information about the racial and Hispanic-origin composition of patients; percent of patients with chronic conditions; percent of patients with a language barrier; use of interpreter services; sources of practice revenue; level and determinants of physician compensation; use of health information technology; physicians' perception of their ability to deliver care; effects of disease management programs and formal practice guidelines; extent of care coordination; malpractice concerns; and various other aspects of physicians' practice of medicine.
Curated
Simple Crosstabs

National Survey of the Public's Moral Concerns about Biobank Research, [United States], 2014 (ICPSR 37179)

Released/updated on: 2018-12-13
Geographic coverage: United States
The National Survey of the Public's Moral Concerns about Biobank Research was designed to explore the effect of "Non-Welfare Interests" (NWIs) on the public's willingness to donate to a biobank. NWIs refer to the moral, religious, or cultural concerns that potential donors may have with how their donated bio-specimens could be used. Respondents were presented with 7 NWI research scenarios and were then asked whether they would be willing to provide blanket (or broad) consent knowing such research might be conducted. The survey also asked about respondents' preferences for 5 biobank consent policies, ranging from blanket (or broad) consent to real-time specific (or study-by-study) consent. A variety of additional sociodemographic and attitudinal data were collected, including responses to the Research Attitudes Questionnaire (RAQ)--a measure of trust in medical research. Additional demographic information collected includes religion, political affiliation, age, education, race, gender, household composition, income, marital status, region, and employment status.
Curated

Patient-Centered Enrollment in Comparative Effectiveness Trials: Mathematical Equipoise [Methods Study], Massachusetts, 2013-2018 (ICPSR 39483)

Released/updated on: 2025-09-04
Geographic coverage: United States
Time period: 2013-01-01--2018-01-01

Comparative effectiveness research compares two or more treatments to see which one works better for certain patients. This research may include randomized controlled trials, or RCTs, in which researchers assign patients to one of the treatments by chance.

A patient may enroll in an RCT when, based on current knowledge of that patient's traits, the treatments being tested have about the same chance of helping. If one treatment is known to have a better chance of helping a patient, then the patient would not enroll and would receive that treatment from the doctor.

Sometimes there isn't enough research to show if one treatment has a better chance of helping than another. In this case, researchers may use computer programs. The programs estimate how well different treatments work in patients with certain traits. For example, a person's age and pain level may affect how much a treatment helps.

These programs would be useful for patients with knee osteoarthritis. Not many RCTs have compared total knee replacement surgery with other treatments such as medicine or physical therapy.

In this study, the research team made a computer program for patients with knee osteoarthritis. It uses data from electronic health records. The program could help identify patients for whom

  • The treatments in the study have about the same chance of helping. These patients may wish to take part in an RCT.
  • A certain treatment may help more than another. These patients could choose that treatment.
  • The research team also made an online system based on the program for patients and doctors to use during a visit. Doctors can use the results from the system to talk with patients about treatment. If appropriate, they could talk about taking part in an RCT.

  • Curated

    Preventing Ethical Disasters in the Practice of Medicine, United States, 2008-2016 (ICPSR 38314)

    Released/updated on: 2022-11-03
    Geographic coverage: United States
    Time period: 2008-01-01--2016-05-27

    Researchers researched and analyzed 280 cases of serious wrongdoing in medicine involving three kinds of violations: improper prescribing of controlled substances (IPCS), sexual abuse of patients (SAP), and unnecessary invasive procedures (UIP). They focused on these three types of wrongdoing because each is traumatizing to patients, causing physical and emotional harm, financial loss, and sometimes death. They are often the cause of major disciplinary actions by medical boards.

    The methodological approach involved identifying potential cases of serious wrongdoing through systematic literature reviews of court records, medical boards reports, newspaper articles, and online materials for each case. Using a detailed codebook, researchers performed descriptive coding of the literature and used a criminal law framework to identify the salient individual and environmental factors that predicted motive, means, and opportunity (MMO) for each case. Within each of the three types of wrongdoing, they identified typologies of cases using qualitative analysis.

    Finally, researchers held a working group meeting with experts to reach a consensus on how findings can inform medical education, policies, and oversight practices to reduce the rates and the duration of serious wrongdoing.

    Curated

    Research Ethics in Patient-Centered Outcomes Research (PCOR) [Methods Study], United States, 2015-2019 (ICPSR 39567)

    Released/updated on: 2025-11-20
    Geographic coverage: United States
    Time period: 2015-01-01--2019-01-01

    Patient-centered outcomes research, or PCOR, is a type of research that focuses on patient values and needs. PCOR includes patients in many parts of the research process, including helping to plan and conduct the study. Institutional Review Boards, or IRBs, oversee research studies to make sure patients participating in a study are protected from harm. But current IRB guidance may not address ethical issues that arise when patients are involved in other roles.

    In this study, the research team created recommendations to guide IRB oversight of PCOR studies.

    Curated

    The Vermont Study on Aid-in-Dying, 2016-2018 (ICPSR 37209)

    Released/updated on: 2019-04-29
    Geographic coverage: Vermont
    Time period: 2016-07-01--2018-06-01

    Legislative support for physician aid-in-dying (PAD) in the US has risen steadily in recent years. In May 2013, Vermont became the fourth state to legalize PAD, through the "Patient Choice and Control at End of Life" Act (Act 39). The law authorized physicians to prescribe a lethal dose of medication to a mentally competent, terminally ill, adult patient for the purpose of ending the patient's life. With ongoing legislative activities in many other states, these laws are expected to spread nationally. This shifting legislative climate raises questions about how societies respond to changes in the sociocultural and biopolitical organization of death. While social scientists have examined the social and political forces that shape 'right to die' movements and counter-movements, sanctioning the right to die is only the first step in institutionalizing PAD as a new cultural and medical practice. What happens once these rights are legally authorized?

    The purpose of this study was to learn about how people in Vermont have been affected by Act 39. This 2-year ethnographic study (July 2016-June 2018) addressed the following overarching research questions:

    1. How do ordinary people understand, access, experience, and contest the 'right to die' through PAD once it has been granted?
    2. How do healthcare providers and policy stakeholders accommodate or resist PAD as a new end-of-life practice?
    3. How does PAD affect the cultural landscape of care for the dying in the US?

    Due to the recent enactment of Act 39, and Vermont's small size and the geographic proximity of key institutions, Vermont offered an ideal setting to explore these questions and document emergent responses to a new socio-legal phenomenon across multiple sites. By tracing the social life of Act 39 from the Vermont State House to the institutions, experts, and ordinary people responsible for managing death, this study yielded valuable information about the broad sociocultural consequences of legalizing PAD, including unintended consequences, that will be relevant to US policymakers, clinicians, patients, and families.

    This collection includes semi-structured interviews with seriously ill Vermont patients, survivors of people who have used Act 39, healthcare providers and administrators, activists, and legislators, as well as participant observation in settings in which PAD is likely to be discussed. Participants were asked about their personal and professional backgrounds, attitudes on death and the legalization of PAD, understandings of the physician's role and responsibilities regarding end-of-life care, and interactions between healthcare providers, patients, and caregivers about PAD. The age, gender, and race of the participants are also provided.