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Community-Based Research Ethics
Puerto Rico is a major epicenter of the AIDS pandemic, fueled by failed policies directed at illegal drug use. Injecting drug use (IDU), or nonprotected sex with an injecting drug user, accounts for nearly two thirds of all cumulative AIDS cases in the island. Increases in the number of AIDS cases are slightly greater for women compared with men. Although the route of infection for the majority of Puerto Rican women is through heterosexual contact, nearly a third are exposed through heterosexual contact with an injecting drug user. Using injected drugs accounted for 37% of the cumulative AIDS cases among women between 1989 and 1996 (Pérez, Suárez, Pérez, & Morales, 1998).
Curtailing the spread of HIV/AIDS among women who use drugs needs to be a public health priority for the island. Research involving drug-using women is necessary to inform all levels of prevention. Given the scant opportunities to obtain drug treatment faced by Puerto Rican drug users, research with clinical samples of drug-using women limits the applicability of findings to the much larger nontreated population. Conducting community-based research is therefore essential to inform public health policy designed to reduce the incidence and adverse impact of HIV/AIDS among Puerto Rican drug-using women. Women who use illicit drugs are vulnerable to risks associated with participating in research. This entry identifies important research risks faced by Puerto Rican female drug users involved in community-based research and suggests research protections for this and similar vulnerable populations.
The Context of Illegal Drug Use in Puerto Rico
Policies directed at preventing and punishing illegal drug use in the United States are based on two assumptions: (1) Use of illegal psychoactive drugs with the potential to create dependence results from moral incompetence or psychological deficits of the user; and (2) problems associated with illegal drug use are inevitably related to the pharmacological properties of the drug itself. Within this framework, illicit drug users are viewed as lacking will and determination and possessing defective personalities (Evans & Sullivan, 2001), and use of any psychoactive drug is problematic and lacking instrumental value (Van de Wijngaart, 1991). This pervasive view has supported state criminalization of drug use and jail sentences as a strategy to curtail the demand for illegal drugs to attain a “drug-free society” and an improved moral environment (U.S. Department of Health, Education, and Welfare, 1979; White House Office of National Drug Control Policy, 1998).
Puerto Rico has followed the mainland United States in adopting a criminal justice model drug policy. Attempts to control demand for illicit drugs by criminalizing their use as well as the possession of injection paraphernalia has marginalized drug users and reduced opportunities to minimize health risks through the application of public health measures, such as access to clean syringes.
A Community Network Approach to Drug Abuse Research Ethics
In 1996, a research group headed by Dr. Margarita Alegría at the University of Puerto Rico's Graduate School of Public Health began a 3-year study funded by the National Institute on Drug Abuse (NIDA). The study sought to determine the extent to which conditions such as partner violence, criminal behavior, incarceration, and contagion with HIV and other sexually transmitted diseases (STDs) were associated with illegal drug use among poor urban Puerto Rican women aged 18 to 35 years. Two groups of women were studied: (1) heroin and cocaine users recruited in areas where drugs were sold in the greater metropolitan area of San Juan and (2) a random sample of women of the same age range residing within the community surrounding the locations from which drug-using women were recruited.
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- Adolescent Development
- Abstinence in Adolescence
- Adolescence and Thriving
- Adolescence, Current Trends and Research About
- Adolescent Females, Physical Activity
- Adolescent Parents, Programs and Policies for
- Adolescent Pregnancy and Births
- Adolescent Sexuality
- Adolescents, at Risk
- Adolescents, Consent and Refusal of Treatment
- Alcohol Use and Disorders Among Youth
- Alcohol, Tobacco, and Drug Use, Media Education for Adolescents
- Asthma in Adolescence
- Athletic Participation and Girls' Development
- Cancer Patients, Adolescent Consent to Research
- Cigarette Smoking in Adolescents
- Dating in Adolescence
- Decision Making Among Adolescents
- Delinquency
- Depression in Adolescence
- Ethnic Identity Development in Minority Adolescents
- Gender Intensification
- HIV Prevention in Young Adults
- Lesbian, Gay, and Bisexual Youth
- Lesbian, Gay, and Bisexual Youth, Sexual Development
- Menarche
- Parenting in Adolescence
- Positive Youth Development, Service-Learning Versus Community Collaborative Models
- Puberty
- Religiosity and Resilience in Adolescence
- Resiliency in Adolescence
- Sexuality, Adolescents' Development of
- Silbereisen, Rainer K.
- Social Support, Urban Adolescents
- Stimulants, Adolescent Use of
- Youth Civic/Political Development
- Youth Development Professionals
- Youth Development Programs, Essential Elements of
- Youth Mentoring
- Youth-Adult Partnerships
- ADS Training and Education
- Education and Applied Developmental Science
- Planning and Evaluation Resource Center (PERC)
- Positive Development
- Training in Applied Developmental Science
- Yale University, Bush Center in Child Development and Social Policy
- Youth Development as a Public Idea
- Youth Development Professionals
- Youth Development Programs, Essential Elements of
- Adult Development
- Adult Development, Definition, Culture, and Applications
- Attention Deficit/Hyperactivity Disorder in Adults
- Chronic Disability in Old Age
- Depression in Later Life
- Depression, Maternal
- Family Caregiving for Elders
- Marriage and Family Therapy
- Mental Health in Later Life, Ecology of
- Mental Retardation, Sociocontextual Influences in Adulthood
- Old Age
- Psychoanalysis in Adults, Theory and Technique
- Sensory Impairment, Aging
- Social Support in Old Age
- Special Education, Transition From School to Young Adulthood
- Spiritual and Religious Coping in Later Life
- Transition in Adulthood
- Transition to College
- Vision Impairment, Late Life Adjustment and Rehabilitation
- Biographies of Applied Developmental Scientists
- Ames, Louise Bates
- Anastasi, Anne
- Benson, Peter L.
- Blum, Robert W.
- Bornstein, Marc H.
- Bronfenbrenner, Urie
- Brooks-Gunn, Jeanne
- Côté, James E.
- Cauce, Ana Mari
- Ceci, Stephen J.
- Chase-Lansdale, P. Lindsay
- Damon, William
- Eccles, Jacquelynne, and the Expectancy-Value Model of Achievement Choice
- Eisenberg, Nancy
- Elkind, David
- Farrington, David P.
- Fisher, Celia B.
- Flanagan, Constance A.
- Floyd, Donald T., Jr.
- Freud, Anna
- Freud, Sigmund
- Gardner, Howard
- Gesell, Arnold Lucius
- Hagen, John William
- Hall, G. Stanley
- Helms, Janet E.
- Horowitz, Frances Degen
- Jacobs, Francine
- Khoo, Kim Choo
- Lamb, Michael
- Lerner, Jacqueline V.
- Lerner, Richard M.
- Lipsitt, Lewis P.
- Little, Rick R.
- Meisels, Samuel J.
- Montessori, Maria
- Moore, Kristin
- Mussen, Paul H.
- Osofsky, Joy Doniger
- Overton, Willis F.
- Petersen, Anne C.
- Phinney, Jean S.
- Piaget, Jean
- Pittman, Karen J.
- Rhodes, Jean
- Savin-Williams, Ritch C.
- Seligman, Martin E. P.
- Sherrod, Lonnie R.
- Silbereisen, Rainer K.
- Smyer, Michael A.
- Spanier, Graham B.
- Terman, Lewis M.
- Watson, John B.
- Weinberg, Richard A.
- Wertlieb, Donald
- Wheeler, Wendy
- Windle, Michael
- Youniss, James
- Child Development
- Advertising, Effects on Children
- Alcoholism Prevention Programs for Children
- Anxiety Disorders in Children
- Bipolar Disorder in Children
- Cancer, Psychosocial Dimensions of
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- Child Care Centers, an International Perspective
- Child Care, Infant and Toddler
- Child Development Across Cultures
- Child Labor
- Children's Reading Comprehension
- Conflict and Conflict Resolution in Early Childhood
- Day Care, Effects on Child Development
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- Early Childhood Care, Development, and Education in Asia
- Early Childhood Education in Turkey
- Feeding Disorders, Childhood
- Giftedness in African American Children
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- Play, Nonsocial, and Social-Emotional Development in Childhood
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- Mentoring
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- Public Policy and Human Development
- Service Learning
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- Culture and Diversity
- Asian Americans, a Term in Transition
- Acculturation
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- African American Youth Development, Cultural Influences
- African Culture, Human Ontogenesis Within
- African Family Traditions, Education and
- Asian American Families and Youth
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- Child Care Centers, an International Perspective
- Child Development Across Cultures
- Community-Based Research Ethics
- Culture and Health
- Culture and Human Development
- Developmental Contextualism and Cultural Adjustment of Immigrant Children
- Early Childhood Care, Development, and Education in Asia
- Early Childhood Education in Turkey
- Ethical Issues in Cross-Cultural Research
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- Native Alaskan Tribes
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- Street Children
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- Alcoholism Prevention Programs for Children
- Infants, Intervention for Premature
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- Mediated Learning Experience
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- Supervision
- Thinking, Education for
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- Developmental Assessment
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- Anorexia Nervosa
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- Clinical Significance
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- Depression in Adolescence
- Developmental Disabilities
- Externalizing Behavior Problems
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- Gastrointestinal Disorders, Developmental Aspects of
- Mental Illness, Serotonin, and Genetics
- Mental Retardation
- Phobias, Childhood
- Postpartum Depression
- Developmental Processes
- Adaptation
- Adaptive Behavior
- Adolescence and Thriving
- Body Size and Image, Female Attitudes and Perceptions About
- Body Size, Societal Views of
- Career Development
- Children's Reading Comprehension
- Cognitive Development
- Cognitive Skills and Aging
- Cortisol and Stress
- Critical-Period Hypothesis
- Decision Making Among Adolescents
- Developmental Assets
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- Giftedness in African American Children
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- Identity Statuses
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- Infant Reflexes
- Language Production in Infants and Toddlers
- Learning in the Life Cycle
- Lesbian, Gay, and Bisexual Youth, Sexual Development
- Limbic System, Hedonic Escalation
- Mastery Motivation, Preschool and Early Childhood
- Mediated Learning Experience
- Meiosis and Its Consequences
- Memory, Flashbulb
- Menarche
- Metacognition
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- Play, Childhood
- Positive Development
- Problem Solving
- Prosocial Behavior
- Puberty
- Resiliency in Adolescence
- Self-Concept
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- Transition to College
- Developmental Risks
- Alcohol Use and Disorders Among Youth
- Child Abuse, Religion-Related
- Child labor
- Cigarette Smoking in Adolescents
- Cocaine
- Delinquency
- Diabetes
- Divorce, Its Impact on Children
- Domestic Violence, Child Exposure to
- Domestic Violence, Impact on Women and Children
- Homelessness and Runaway Youth
- Incarcerated Mothers, Children of
- Learned Helplessness and Learned Optimism
- Malnutrition, Effects of
- Obesity
- Risk Behaviors
- Sensory Impairment, Vision and Hearing
- Siblinghood, Transitions to
- Stimulants, Adolescent Use of
- Substance Use and Abuse Across the Life Span
- Sudden Infant Death Syndrome (SIDS)
- Traumatic Brain Injury, School Adjustment
- Violence, Effects on Development
- Youth Prostitution
- Ecology of Human Development
- Advertising, Effects on Children
- Body Types, Appraisals of
- Bullying, School
- Career Choice
- Community
- Community Linkages, Levels of
- Community Schools and Applied Developmental Research
- Community Youth Development
- Developmental Contextualism
- Developmental Contextualism and Cultural Adjustment of Immigrant Children
- Developmentally Attentive Communities
- Education, Urban
- Families, Dual-Career
- Interactive Media, Effects of
- Internet
- Maternal Employment
- Media and Children's Fears
- Media Use, Reading, and Academic Achievement
- Media Violence
- Mental Retardation, Sociocontextual Influences in Adulthood
- Occupations and Gender
- Peer Play in Early Childhood
- Peer Relationships
- Refugees
- School Counseling
- School Refusal
- School Transitions, Impact, Intervention, and Policy
- Schools and School Reform
- Schools, Consultation to
- Social Capital
- Social Change and Human Development
- Social Exclusion
- Social Support
- Social Support in Old Age
- Social Support, Urban Adolescents
- Sports, High School
- Television, Educational and Prosocial Effects of
- Video Games
- Youth Culture, Hip-hop
- Youth-Adult Partnerships
- Emotional and Social Development
- Ethics
- Families
- Adoption
- African Family Traditions, Education and
- Divorce, Its Impact on Children
- Families, Dual-Career
- Families, Immigrant Families in the United States
- Families, Multigenerational
- Family Caregiving for Elders
- Family Policy
- Family Systems Theory
- Immigrant Families, European
- Immigrants, Experiences of
- Latino Families in America
- Native American Children and Families
- Television, Mediating Effects of Family Communication
- Foundations
- Health
- Abstinence in Adolescence
- Adolescent Pregnancy and Births
- Asthma in Adolescence
- Cancer Patients, Adolescent Consent to Research
- Cancer, Psychosocial Dimensions of
- Celiac Disease
- Cortisol and Stress
- Culture and Health
- Diabetes
- Frontal Cortex
- HIV Prevention in Young Adults
- HIV Prevention With Injecting Drug Users
- Obesity, Pediatric
- Obesity, Prevention in Childhood
- Psychotropic Medications
- Religiosity and Mental Health
- Sensory Impairment, Aging
- Vision Impairment, Late Life Adjustment and Rehabilitation
- Visual Impairment Across the Life Span
- Youth Development as a Public Idea
- Youth Development Professionals
- Youth Development Programs, Essential Elements of
- Historical Influences
- Infant Development
- Organizations
- American Psychological Association, Division 7 (Developmental Psychology)
- Boys & Girls Clubs of America
- Bronfenbrenner Life Course Center
- Center for Child and Family Policy, Duke University
- Center for Social Development, Applied Developmental Science at
- Center for the Study of Human Development (CSHD), Brown University
- Center for Youth as Resources (CYAR), Headquarters for the Youth as Resources® (YAR)
- Child and Family Research, National Institute of Child Heath and Human Development
- Child Trends
- Community-Campus Partnerships and Community-Based Program Evaluation
- Erikson Institute
- Faith-Based Organizations
- Four-H (4-H)
- Head Start
- ImagineNations Group
- Innovation Center for Community and Youth Development
- Institute for Applied Research in Youth Development
- Institute for Policy Research, Northwestern University
- International Society for the Study of Behavioral Development
- Murray, Henry A., Research Center
- National Council on Family Relations
- Public Policy and Youth Development
- Search Institute
- Society for Research on Adolescence
- Society for the Psychological Study of Ethnic Minority Issues
- Society for the Study of Human Development
- Society of Clinical Child and Adolescent Psychology, Division 53, American Psychological Association
- UNICEF
- United Nations Convention on the Rights of the Child
- World Health Organization
- YouthBuild USA
- Parenting
- Adolescent Mothers
- Adolescent-Parent Relations
- Attachment, Child-Parent
- Bonding, Parent-Child
- Discipline, Early Childhood
- Families, Multigenerational
- Father Involvement
- Foster Care
- Gay and Lesbian Parenting, Community Attitudes Toward
- Gay and Lesbian Parenting, Legal Aspects of
- Parent Advocacy
- Parent Education
- Parent Expectations
- Parent Involvement, Programs in
- Parental Involvement in Education
- Parental Self-Efficacy
- Parenting in Adolescence
- Parenting, Chinese Families and
- Parenting, Divorce and
- Parenting, Native Americans and
- Parenting, Prejudice and
- Parenting, Single Mothers
- Parenting, Stressful Environments and
- Television, Mediating Effects of Family Communication
- Personality Development
- Religiosity and Spirituality
- Research Methodology
- Adolescence, Current Trends and Research About
- Assessment, Cultural Validity of
- Asset Mapping
- Brain Mapping
- Change, Quantitative and Qualitative Aspects of
- Community-Based Research Ethics
- Day Care, Measuring Quality of Care
- Delinquent Development, the Cambridge Study
- Field Experimentation Research
- Forensic Interviewing
- Policy-Relevant Methods in Applied Developmental Science
- Program Evaluation
- Research Design, Developmental
- Research Methods, Quantitative
- Research Methods, Statistical Analysis for Longitudinal Research
- Schools
- Social Issues
- Adolescent Mothers
- AIDS, Women, and Poverty
- Computer Games
- Family Policy
- Juvenile Justice, Racial Differences
- Media and Developmental Science
- Parenting, Single Mothers
- Participant Advocate, Research Involving Children
- Prejudice in Childhood
- Racism
- Silbereisen, Rainer K.
- Socioeconomic Status
- Welfare Reform
- Work and Family Life
- Theory
- “Goodness of Fit” and Development
- Applied Developmental Science, Concepts of
- Behavior Theory
- Developmental Contextualism and Cultural Adjustment of Immigrant Children
- Developmental Systems Theories
- Eccles, Jacquelynne, and the Expectancy-Value Model of Achievement Choice
- Empowerment Theory and Youth
- Erickson's Theory
- Family Systems Theory
- Identity, Helm's Theory of Racial
- Life Events
- Life Expectancy and the Life Span
- Overton, Willis F., Philosophical Foundations of Developmental Science
- Pediatric Psychology
- Perceptual Development, Childhood
- Philosophy of Science and Applied Developmental Science
- Positive Psychology
- Positive Psychology, Seligman's Concept of
- Positive Youth Development, a Developmental Systems View
- Problem Behavior Theory
- Psychoanalysis in Adults, Theory and Technique
- Recapitulation
- Sport Psychology
- Stage Theories of Human Development
- Stage-Environment Fit Theory
- Television, Children's Processing of
- Universities
- Bronfenbrenner Life Course Center
- Catholic University of America
- Center for Child and Family Policy, Duke University
- Center for the Study of Human Development (CSHD), Brown University
- Fordham University
- Fuller Theological Seminary
- Institute for Applied Research in Youth Development
- Institute for Policy Research, Northwestern University
- Institute of Child Development
- Michigan State University, Applied Developmental Science at
- Northwestern University, Human Development and Social Policy Program
- Tufts University, Eliot-Pearson Department of Child Development
- University of Michigan
- University of Wisconsin–Madison
- Yale University, Bush Center in Child Development and Social Policy
- Youth Programs
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