User Beware: Privacy Settings just a Facade

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By Brenda Curtis, Ph.D.

Social media platforms continue to improve and refine their privacy settings as the demand for advanced user protections increases. Although enabling catered privacy settings to online profiles allows users to indicate who they would like share personal information with, it does not necessarily protect them from the platforms – i.e. websites and apps – themselves. Since social media accounts provide users with a sense of control over personal data, users assume that their information is safe. However, no matter what settings or privacy protections are applied to personal profiles, users do not generally have control over the online platform itself. What this means is the website or app being used usually shares information from accounts with third parties like advertising agencies or other databases. This data sharing is widespread throughout the industry, but it is not generally known by the public. This is partly because the disclosure of this sharing is done in the social media platform’s “Terms and Conditions” Which are often skimmed over or ignored.

Aside from social media websites, there are several other websites and apps that access your personal information via this information sharing to create a single database for everyone in the country. This is generally called data aggregation. One such site that has been in the news recently is FamilyTreeNow.  FamilyTreeNow is explicitly a genealogy site, and compiles information from various legal online sources to create a database full of personal information for genealogical research. This site pairs information from public records such as police records and court documents with the information collected from social media and address databases to create a sometimes way too revealing profile. Not too long ago, most of this information would only be accessible after exhaustive research, but Now FamilyTreeNow makes this information as easy to find as a click of a button, and publicly accessible.

Although the website might be fascinating for someone with genuine curiosity about their own family tree, the danger of anyone having access to information to a person’s age, birth year, address, family members and even public records is something that cannot be ignored. In today’s world, access to this type of personal information makes crimes like identity theft much easier to conduct and can provide the basis for access to financial accounts, credit records and other accounts and assets. For years we have been cautioning users against posting too much information online, but increasingly, due to data aggregators like FamilyTreeNow, this information is being posted without our knowledge or consent on publicly accessible sites.

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‘Goodness of Fit Ethics’ to Promote Health Research for LGBT Youth

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This past November, Public Responsibility in Medicine and Research (PRIM&R), a non-profit organization dedicated to the study and advancement of the highest ethical standards in the conduct of research, held its annual Advancing Ethical Research (AER) Conference featuring Dr. Celia B. Fisher, Director of the Center for Ethics Education and HIV and Drug Abuse Prevention Research Ethics Training Institute at Fordham University. She, along with Janet L. Brody, PhD and Eric Kodish, MD, were panelists on Panel III: Research With Children and Adolescents: Who and How Is the Decision Made to Participate?

Discussing her NIH-funded research on ethical issues in research involving LGBT youth, Dr. Fisher discussed the “interfamilial, regulatory and ethical tensions” that emerge in HIV prevention studies striving to recruit sexual and gender minority adolescents under 18 years of age.

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Ethics & Society Newsfeed: October 14, 2016

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Health Care and Bioethics

DNA database highlights need for new medical privacy protections
Creation of a national repository of genetic information is seen by some as crucial to reducing medical costs and improving people’s healthcare.

‘Big data’ could mean big problems for people’s healthcare privacy
Public and private insurers are spending millions of dollars on systems that can predict people’s future healthcare needs.

Colorado Wrestles With Ethics Of Aid In Dying As Vote Looms
Colorado man says he would like the option to end his life rather than face a painful death and advocates for Colorado’s Proposition 106  or “death with dignity.”

The NIH needs to review the ethics of research on primates
Congress asked the National Institutes of Health to review “its ethical policies and processes” on nonhuman primate research “to ensure it has appropriate justification for animal research protocols.”

Breast Cancer Death Rates Are Down, But Racial Disparities Persist
Women are less likely to die of breast cancer than they were a decade ago, but not all women are benefiting from that trend.

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Medical Training for Transgender Patients Needs to Include Sensitivity to Social Stigmas for both Gender and Sexual Orientation

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The recently published article on doctor’s lack of expertise in treating transgender patients in The Guardian is an important step forward in highlighting current disparities in healthcare services for this population.  The study, based on interviews with sample of 23 physicians and psychologists who chose to work with transgender patients, focused on current challenges in providing gender affirming care for individuals who are seeking medically supported transitioning treatments, such as hormonal replacement therapies (HRT).

A recently completed study by Celia B. Fisher, Ph.D. and her colleagues, funded by the National Institute for Minority Health and Health Disparities (NIMHD) confirms the need for greater medical training, based on the reports of 228 transgender males, females and gender non-conforming youth ages 14 – 21.  “Fear of stigmatization is a significant barrier to healthcare among these youth,” notes Fisher, Director of Fordham University’s Center for Ethics Education, “and in our study, 51% reported they did not discuss their transgender identity with their primary health care providers out of fear that the provider would not be accepting.”

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Fordham RETI Fellow Addresses Stigma for HIV-Positive Gay and Bisexual Men

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Dr. Jonathon Rendina, Hunter College, CUNY

The minority stress theory suggests that health disparities experienced by gay and bisexual men (GBM) and other sexual minorities can be explained in terms of stigma-related stressors such as discrimination at work, school, religious institutions, communities and families. The unique stressors of an HIV-positive status experienced by GBM, however, has been overlooked within research on minority stress.

Fordham University Center for Ethics Education HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI) Fellow Dr. Jon Rendina, an Assistant Professor in the Department of Psychology and Faculty Investigator and Director of Quantitative Methods at The Center for HIV Educational Studies & Training (CHEST) of Hunter College, CUNY, recently addressed this issue within a paper published in Annals of Behavioral Medicine.

Dr. Rendina has been conducting HIV research with GBM for more than ten years. He explained the need to thoroughly test “the role of internalized stigma about sexual orientation, or internalized homophobia, and internalized HIV stigma within a unified model to see whether one or both have an impact on HIV-positive gay or bisexual men.” Although it is already established that GBM are negatively impacted by internalized sexual minority stigma, the purpose of this study was to further explore the impact of HIV-related stressors on the health of GBM.

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Will Research on 10,000 New Yorkers Fuel Future Racial Health Inequality?

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By Celia B. Fisher, Ph.D.

A 20-year, multi-million dollar study of more than 10,000 New Yorkers scheduled to begin next year claims that it will enable the development of theories, therapeutics, and policies to improve the health and quality of human life.  Although still in the planning stages, the breadth of the data collection proposed (including health habits, biological data, and geospatial mapping) combined with the lack of detail accompanying such a widespread publicity effort raises questions regarding the extent to which the research risks of such an endeavor have been well thought out.

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Its not just mental health studies: Doctors rarely ask adolescent patients about their sexual orientation & LGBT youth are afraid of bias

A recent report underscores the paucity of mental health research relevant to LGBT patients.  According to Celia B. Fisher, Ph.D., Director of the Fordham University Center for Ethics Education this unfortunate situation is not unique to research studies.

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