Direct-to-Consumer Genetic Ancestry Testing: A Morally Objectionable Practice

The popularity of direct-to-consumer (DTC) genetic ancestry testing has resulted in a surge of life-changing news for consumers and their families. DTC genetic ancestry testing companies and third-party websites have provided consumers with new ways to create family trees and connect with unknown relatives. However, these ways do not come without the potential harms of violating familial autonomy and privacy. This paper will examine the ethical implications of participating in DTC genetic ancestry testing, including violations of familial autonomy and privacy. These violations occur due to lack of familial consent, and inadequate database privacy measures. I argue that it is morally impermissible to submit DNA to DTC genetic ancestry testing companies because familial consent is morally required, but impossible –one should not submit one’s genetic data for ancestry testing because one is unable to fulfill her obligations to obtain unknown and possibly known family members’ consent. However, I appreciate that sending DNA to DTC genetic ancestry companies is not illegal, nor are these companies prohibited from conducting business in the United States (U.S.). Therefore, I offer recommendations for consumers and companies to decrease the harms that may occur by submitting DNA to DTC genetic ancestry companies. I discuss the uniqueness of DNA, familial autonomy and privacy implications, legal and psychological implications, and database privacy risks, all of which must be considered when weighing the benefits against the harms of genetic ancestry testing. I conclude by raising objections to my argument that individuals should not engage in DTC genetic ancestry testing and provide responses including the counterargument that individual action results in tangible consequences when it comes to genetic databases, and that the public, not just some individuals, should cease participation in DTC testing. Ultimately, if all consumers stop purchasing DTC genetic ancestry tests, future generations will not be harmed by their ancestors’ failing to respect familial autonomy and privacy due to DTC genetic ancestry companies and their databases

Voluntary workplace genomic testing: wellness benefit or Pandora\u27s box?

Consumer interest in genetic and genomic testing is growing rapidly, with more than 26 million Americans having purchased direct-to-consumer genetic testing services. Capitalizing on the increasing comfort of consumers with genetic testing outside the clinical environment, commercial vendors are expanding their customer base by marketing genetic and genomic testing services, including testing for pharmacogenomic and pathogenic variants, to employers for inclusion in workplace wellness programs. We describe the appeal of voluntary workplace genomic testing (wGT) to employers and employees, how the ethical, legal, and social implications literature has approached the issue of genetic testing in the workplace in the past, and outline the relevant legal landscape. Given that we are in the early stages of development of the wGT market, now is the time to identify the critical interests and concerns of employees and employers, so that governance can develop and evolve along with the wGT market, rather than behind it, and be based on data, rather than speculative hopes and fears

Behavioural economics, motivating psycho-education improvements; a mobile technology initiative in South Africa

Here we report on a health behavioural support project, using incentivised behaviour on a mobile platform through M4JAM. This was a proof of concept study to support further developments, more specifically targeted at the management of Tuberculosis and Human Immunodeficiency Virus. The study reported here examines the impact of financial rewards and app towards improving mental health outcomes in South Africa. 136 participants were recruited from a database and dichotomized into self-determined and heteronomous groups based on self-report scores. Overall the findings highlighted that personal financial incentives have a role in motivating behaviour and that individuals with higher levels of self-determinate motivation. The findings are discussed in light of the usefulness of an incentivized mobile platform in real-world practice to encourage mental health improvements in a low to middle-income countries

Common issues, different approaches: strategies for community–academic partnership development

BAIARDI JM, BRUSH BL and LAPIDES S. Nursing Inquiry 2010; 17 : 289–296 Common issues, different approaches: strategies for community–academic partnership development Communities around the United States face many challenging health problems whose complexity makes them increasingly unresponsive to traditional single-solution approaches. Multiple approaches have considered ways to understand these health issues and devise interventions that work. One such approach is community-based participatory research. This article describes the development of a new collaborative partnership between a school of nursing and an urban social service agency using community-based participatory research as a framework. We describe the partnership’s evolution and process of data collection and analysis and evaluate the outcomes of both. We argue that community-based participatory research involves partnerships at its core whose members, both as individuals and part of the collaboration, must be committed and nimble in the face of shifting and challenging health and social problems, recognize common issues and concerns across the boundaries of community and academia, and respect each other’s different approaches and expertise.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/79191/1/j.1440-1800.2010.00509.x.pd

Care for patients with severe mental illness: the general practitioner's role perspective

BACKGROUND: Patients with severe mental illness (SMI) experience distress and disabilities in several aspects of life, and they have a higher risk of somatic co-morbidity. Both patients and their family members need the support of an easily accessible primary care system. The willingness of general practitioners and the impeding factors for them to participate in providing care for patients with severe mental illness in the acute and the chronic or residual phase were explored. METHODS: A questionnaire survey of a sample of Dutch general practitioners spread over the Netherlands was carried out. This comprised 20 questions on the GP's 'Opinion and Task Perspective', 19 questions on 'Treatment and Experiences', and 27 questions on 'Characteristics of the General Practitioner and the Practice Organisation'. RESULTS: 186 general practitioners distributed over urban areas (49%), urbanised rural areas (38%) and rural areas (15%) of the Netherlands participated. The findings were as follows: GPs currently considered themselves as the first contact in the acute psychotic phase. In the chronic or residual phase GPs saw their core task as to diagnose and treat somatic co-morbidity. A majority would be willing to monitor the general health of these patients as well. It appeared that GP trainers and GPs with a smaller practice setting made follow-up appointments and were willing to monitor the self-care of patients with SMI more often than GPs with larger practices.GPs also saw their role as giving support and information to the patient's family.However, they felt a need for recognition of their competencies when working with mental health care specialists. CONCLUSION: GPs were willing to participate in providing care for patients with SMI. They considered themselves responsible for psychotic emergency cases, for monitoring physical health in the chronic phase, and for supporting the relatives of psychotic patients

Finishing the euchromatic sequence of the human genome

The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead