Using At-Home DNA Tests for Criminal Investigations – A Call for a Collective Approach to Investigative Genetic Genealogy

2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 61-61
Author(s):  
Nina de Groot ◽  
◽  
Keyword(s):  
Target Population ◽  
Genetic Profile ◽  
Ethical Challenges ◽  
Genetic Genealogy ◽  
Dna Test ◽  
Ethical Concerns ◽  
Ethical Debate ◽  
Criminal Suspects ◽  
Disease Risks ◽  
At Home

"Tens of millions of people worldwide have taken a commercial at-home DNA test out of interest in their genetic ancestry, disease risks, cilantro taste aversion, or athletic performance capacities. Yet, this consumer DNA data is also of interest to law enforcement: the data can be used to identify criminal suspects. By uploading a genetic profile from an unknown suspect, found at the crime scene, to a database with consumer’s genetic data, one could find a distant relative of the suspect. Through the mapping of this relative’s family tree, police can eventually zero in on the actual perpetrator. However, this investigative genetic genealogy (IGG) raises ethical concerns. In this presentation, I aim to contribute to the bioethical analysis of IGG by exploring the limitations of an individual-based model for IGG. I discuss two ethical concerns of IGG: privacy and informed consent. However, I argue that IGG raises specific ethical challenges that extend beyond these two autonomy-related concepts. Because of the far-reaching scope to identify even very distant relatives, IGG could identify a vast majority of a target population, thus making it also a collective issue. I explore how the ethical approach of individual consent and relatives in the biomedical genetic context can be helpful for the debate on IGG. Additional ethical concerns arise from the international, transgenerational, and commercial nature of IGG. I call for a more collective approach to IGG in the ethical debate. "

scholarly journals Commercial DNA tests and police investigations: a broad bioethical perspective

2021 ◽  
pp. medethics-2021-107568
Author(s):  
Nina F de Groot ◽  
Britta C van Beers ◽  
Gerben Meynen
Keyword(s):  
Individual Based Model ◽  
Dna Test ◽  
Ethical Concerns ◽  
Criminal Investigations ◽  
Ethical Debate ◽  
Police Investigations ◽  
Disease Predisposition ◽  
The Individual ◽  
Genetic Context ◽  
At Home

Over 30 million people worldwide have taken a commercial at-home DNA test, because they were interested in their genetic ancestry, disease predisposition or inherited traits. Yet, these consumer DNA data are also increasingly used for a very different purpose: to identify suspects in criminal investigations. By matching a suspect’s DNA with DNA from a suspect’s distant relatives who have taken a commercial at-home DNA test, law enforcement can zero in on a perpetrator. Such forensic use of consumer DNA data has been performed in over 200 criminal investigations. However, this practice of so-called investigative genetic genealogy (IGG) raises ethical concerns. In this paper, we aim to broaden the bioethical analysis on IGG by showing the limitations of an individual-based model. We discuss two concerns central in the debate: privacy and informed consent. However, we argue that IGG raises pressing ethical concerns that extend beyond these individual-focused issues. The very nature of the genetic information entails that relatives may also be affected by the individual customer’s choices. In this respect, we explore to what extent the ethical approach in the biomedical genetic context on consent and consequences for relatives can be helpful for the debate on IGG. We argue that an individual-based model has significant limitations in an IGG context. The ethical debate is further complicated by the international, transgenerational and commercial nature of IGG. We conclude that IGG should not only be approached as an individual but also—and perhaps primarily—as a collective issue.

scholarly journals How ethical challenges of covert observations can be met in practice

2021 ◽  
pp. 174701612110082
Author(s):  
Nicole Podschuweit
Keyword(s):  
Social Research ◽  
Role Playing ◽  
Great Distance ◽  
Point Of View ◽  
Ethical Challenges ◽  
Research Subjects ◽  
Written Information ◽  
Ethical Debate ◽  
The People ◽  
Almost All

This paper aims to bring into the ethical debate on covert research two aspects that are neglected to date: the perspective of the research subjects and the special responsibility of investigators towards their observers. Both aspects are falling behind, especially in quantitative social research. From a methodological point of view, quantitative forms of covert observation involve a great distance between the researcher and the research subjects. When human observers are involved, the focus is usually on the reliable application of the measuring instrument. Therefore, herein, a quantitative study is used as an example to show how the protection needs of both the observed persons and the observers can be met in practice. The study involved 40 student observers who covertly captured everyday conversations in real-world settings (e.g. in cafés or trains) by a highly standardised observation scheme. The study suggests that the anonymity of the research subjects and their trust in the observers are crucial for their subsequent consent. However, many participants showed only little or even no interest in the written information they were provided. Further, this study strongly emphasises how mentally stressful covert observations are to the observers. Almost all observers were worried in advance that the people they were observing would prematurely blow their cover and confront them. Role-playing and in-depth discussions in teams are good strategies to alleviate such and other fears and to prepare student assistants well for their demanding work in the field.

scholarly journals ETHICAL CONCERNS REGARDING MALE CIRCUMCISION CULTURE: A SELECTED ETHNICAL GROUP

2017 ◽  
Vol 5 ◽  
pp. 737-740
Author(s):  
Cabangile N. Ngwane
Keyword(s):  
Male Circumcision ◽  
Ethical Issues ◽  
Cultural Practices ◽  
Target Population ◽  
Way Of Life ◽  
Community Culture ◽  
Ethical Concerns ◽  
Indigenous Group ◽  
Values And Beliefs ◽  
Hiv Aids

: Traditional cultural practices reflect values and beliefs of members of a community. Culture is an umbrella term, which explains common things people share such as language, customs, beliefs and the way of life. This paper seeks to look at male circumcision culture of a certain indigenous group in South Africa. Male circumcision is associated with ethnic marks, virility, masculinity, rite of passage to manhood however, there are many ethical concerns centering on male circumcision. Hence, this paper seeks to explore the ethical concerns surrounding male circumcision culture of a selected ethnical group in order to contribute to ethical execution of the practice. Little has been done on ethical issues surrounding male circumcision. The fallacy surrounding this phenomenon needs further investigation. The paper intends to contribute to the debate on male circumcision as a way of mitigating HIV/AIDS infections. The Social Norm Theory has been used to explain the phenomenon under study. The constructivist research paradigm enabled the interviewing of participants from the target population, as the study is inductive in nature. The key finding was that they do male circumcision mostly in an unethical way that it also affects women and children. They also do it based on the misconception and the fallacy that they will not get HIV/AIDS.

The Researcher and the Researched: Navigating the Challenges of Research in Conflict-Affected Environments

2020 ◽  
Author(s):  
Eleanor Gordon
Keyword(s):  
Social Science ◽  
Social Science Research ◽  
Science Research ◽  
Ethical Challenges ◽  
Ethical Concerns ◽  
Research Participants ◽  
Methodological Challenges ◽  
Security Challenges ◽  
Different Cultures

Abstract Ethical concerns associated with social science research are heightened in conflict-affected environments, due to increased insecurity and the vulnerability of many research participants. This article considers some of the main challenges faced by researchers in conflict-affected environments and how they can be addressed, focusing in particular on ethical and security challenges. It also considers other challenges, which are often overlooked, such as the epistemological and methodological challenges of acquiring knowledge in conflict-affected environments, where research participants may be from different cultures, may speak different languages, and may be deeply traumatized and distrustful of others. In such places, research participants may employ techniques to assuage or discourage the researcher, including projecting borrowed narratives or remaining silent. This article argues that navigating security and ethical challenges, attending to issues of power, and remaining genuinely self-reflective can help fulfill the optimal potential of research in conflict-affected environments, which is to challenge narratives that perpetuate conflict, harm, and insecurity and to contribute to a better understanding and, thus, response to the challenges of conflict and peacebuilding.

scholarly journals Moral Limits of Brain Organoid Research

2019 ◽  
Vol 47 (4) ◽  
pp. 760-767 ◽  
Author(s):  
Julian J. Koplin ◽  
Julian Savulescu
Keyword(s):  
Stem Cell ◽  
Human Brain ◽  
Stem Cell Research ◽  
Cognitive Abilities ◽  
Moral Status ◽  
Ethical Challenges ◽  
Ethical Concerns ◽  
Moral Framework ◽  
Brain Organoid ◽  
Regulations And Guidelines

Brain organoid research raises ethical challenges not seen in other forms of stem cell research. Given that brain organoids partially recapitulate the development of the human brain, it is plausible that brain organoids could one day attain consciousness and perhaps even higher cognitive abilities. Brain organoid research therefore raises difficult questions about these organoids' moral status – questions that currently fall outside the scope of existing regulations and guidelines. This paper shows how these gaps can be addressed. We outline a moral framework for brain organoid research that can address the relevant ethical concerns without unduly impeding this important area of research.

scholarly journals The culture of hope and ethical challenges in clinical trials: A qualitative study of oncologists and haematologists’ views

2019 ◽  
Vol 15 (1) ◽  
pp. 29-38 ◽  
Author(s):  
Tove E Godskesen ◽  
Suzanne Petri ◽  
Stefan Eriksson ◽  
Arja Halkoaho ◽  
Margrete Mangset ◽  
...  
Keyword(s):  
Health Care ◽  
Clinical Trials ◽  
Qualitative Study ◽  
Empirical Research ◽  
Health Care Professionals ◽  
Therapeutic Misconception ◽  
Ethical Challenges ◽  
Know How ◽  
Ethical Concerns ◽  
Clinical Cancer

We do not know how much clinical physicians carrying out clinical trials in oncology and haematology struggle with ethical concerns. To our knowledge, no empirical research exists on these questions in a Nordic context. Therefore, this study aims to learn what kinds of ethical challenges physicians in Sweden, Denmark and Finland (n = 29) face when caring for patients in clinical trials; and what strategies, if any, they have developed to deal with them. The main findings were that clinical cancer trials pose ethical challenges related to autonomy issues, unreasonable hope for benefits and the therapeutic misconception. Nevertheless, some physicians expressed that struggling with such challenges was not of great concern. This conveys a culture of hope where health care professionals and patients uphold hope and mutually support belief in clinical trials. This culture being implicit, physicians need opportunities to deliberately reflect over the characteristics that should constitute this culture.

Text Messaging and Private Practice: Ethical Challenges and Guidelines for Developing Personal Best Practices

2013 ◽  
Vol 35 (3) ◽  
pp. 211-227 ◽  
Author(s):  
Michael Sude
Keyword(s):  
Mental Health ◽  
Best Practices ◽  
Private Practice ◽  
Text Messaging ◽  
Ethical Issues ◽  
Ethical Challenges ◽  
Ethical Concerns ◽  
Message Service ◽  
Impact Of Technology ◽  
The Impact

The impact of technology on mental health practice is currently a concern in the counseling literature, and several articles have discussed using different types of technology in practice. In particular, many private practitioners use a cell phone for business. However, no article has discussed ethical concerns and best practices for the use of short message service (SMS), better known as text messaging (TM). Ethical issues that arise with TM relate to confidentiality, documentation, counselor competence, appropriateness of use, and misinterpretation. There are also such boundary issues to consider as multiple relationships, counselor availability, and billing. This article addresses ethical concerns for mental health counselors who use TM in private practice. It reviews the literature and discusses benefits, ethical concerns, and guidelines for office policies and personal best practices.

scholarly journals Breast Screening Reminder Letters and Phone Calls to Women in Their Language

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 39s-39s
Author(s):  
M. Scanlon ◽  
V. Pridmore ◽  
M. Davis ◽  
A. Cooper ◽  
A. Beauchamp ◽  
...  
Keyword(s):  
Breast Screening ◽  
Intervention Group ◽  
Target Population ◽  
Control Group ◽  
Reminder Letter ◽  
Breast Screen ◽  
Phone Calls ◽  
Italian Women ◽  
Reminder Letters ◽  
At Home

Background: BreastScreen Victoria (BSV) provides free breast screening to women aged 40+; targeting women aged 50-74. The program reduces breast cancer-related deaths by up to 28%. BSV aims to ensure equitable participation by all women in the target population. However, women from Arabic and Italian speaking backgrounds have lower breast screening participation compared with English-speaking women. A needs analysis involving consultation with Arabic and Italian speaking women found that invitation letters and calls are important enablers to breast screening, however language is a barrier. Women suggested sending reminder letters and making outbound reminder calls in their language. Aim: The aim of this study was to determine whether, and to what extent, reminder letters and phone calls in language resulted in increased screening rates in Arabic and Italian women. Methods: Two randomized control trials ran in 2017. TRIAL 1: Women due for a routine breast screen who speak Italian or Arabic at home were randomized into one of two trial arms: women in the intervention arm received a reminder letter in language (with the English version enclosed also), and women in the control arm received a reminder letter in English only. 1032 women were included in the study; comprising 322 Arabic and 710 Italian women. TRIAL 2: Lapsed women (had not had a breast screen within 27 months) who speak Italian or Arabic at home were randomized into one of two trial arms: women in the intervention arm received an outbound call in language inviting them to book an appointment; women in the control arm did not receive a call. 219 lapsed screeners were included; comprising 93 Arabic and 126 Italian women Results: TRIAL 1: • Women in the intervention arm more frequently booked (61.2%) compared with the control group (59.8%). However, this difference was not statistically significant. • For Italian women, 64.5% in the intervention group and 66.2% in the control group booked a screening appointment within 30 days of the mail out. Among Arabic women, the rates were 53.1% and 47.5% respectively. TRIAL 2: • Women in the intervention group were 10.7 times more likely to make a booking (42.9%) compared with the control group (4%). The effect was larger for Arabic than for Italian women. Conclusion: Sending reminder letters to Italian and Arabic women in their own language did not result in a statistically significant increase in bookings. Making reminder phone calls to Italian and Arabic women in their own language did result in a large, statistically significant increase in bookings and attendance.

Hard Labor

2017 ◽  
Author(s):  
Lisa Freitag
Keyword(s):  
Social Isolation ◽  
Medical Technology ◽  
Emotional State ◽  
Poor Health ◽  
Narrative Form ◽  
Ethical Concerns ◽  
Parent Caregivers ◽  
Parent Narratives ◽  
Financial Burdens ◽  
At Home

Much of the research on parent caregivers examines only the physical or emotional state of the caregiver, reporting such problems as depression, stress, and poor health. Some more recent studies from the nursing and ethics literature, done mostly with families of children who are living at home and dependent on medical technology, also begin to uncover ethical concerns. This chapter outlines the tasks involved in extreme caregiving, dealing with the most well-researched ones: the physical and financial burdens of care, social isolation, and the need to maintain positivity and advocate for the child’s inclusion. Correlating existing studies with statements made by parents in narrative form, it becomes clear that issues raised by researchers are mirrored by parents. In addition, parent narratives reveal deeper concerns that researchers have not uncovered and begin to offer some explanation behind the problems that have been reported.

scholarly journals Ethical concerns in suicide research: thematic analysis of the views of human research ethics committees in Australia

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Emma Barnard ◽  
Georgia Dempster ◽  
Karolina Krysinska ◽  
Lennart Reifels ◽  
Jo Robinson ◽  
...  
Keyword(s):  
Research Ethics ◽  
Thematic Analysis ◽  
Ethics Committees ◽  
Research Ethics Committees ◽  
Ethical Challenges ◽  
Ethical Guidelines ◽  
Human Research ◽  
Related Research ◽  
Ethical Concerns ◽  
Human Research Ethics

Abstract Background Suicide research aims to contribute to a better understanding of suicidal behaviour and its prevention. However, there are many ethical challenges in this research field, for example, regarding consent and potential risks to participants. While studies to-date have focused on the perspective of the researchers, this study aimed to investigate the views and experiences of members of Human Research Ethics Committees (HRECs) in dealing with suicide-related study applications. Methods This qualitative study entailed a thematic analysis using an inductive approach. We conducted semi-structured interviews with a purposive sample (N = 15) of HREC Chairs or their delegates from Australian research-intensive universities. The interview guide included questions regarding the ethical concerns and challenges in suicide-related research raised by HREC members, how they dealt with those challenges and what advice they could give to researchers. Results The analysis identified four main themes: (1) HREC members’ experiences of reviewing suicide-related study applications, (2) HREC members’ perceptions of suicide, suicide research, and study participants, (3) Complexity in HREC members’ decision-making processes, and (4) HREC members’ relationships with researchers. Conclusions Reliance on ethical guidelines and dialogue with researchers are crucial in the assessment of suicide-related study applications. Both researchers and HREC members may benefit from guidance and resources on how to conduct ethically sound suicide-related studies. Developing working relationships will be likely to help HRECs to facilitate high quality, ethical suicide-related research and researchers to conduct such research.

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