Genetic Counseling and the Ethical Issues Around Direct to Consumer Genetic Testing

Abstract

Over the last several years, direct to consumer(DTC) genetic testing has received increasing attention in the public, healthcare and academic realms. DTC genetic testing companies face considerable criticism and scepticism,particularly from the medical and genetic counseling community. This raises the question of what specific aspects of DTC genetic testing provoke concerns, and conversely,promises, for genetic counselors. This paper addresses this question by exploring DTC genetic testing through an ethic allens. By considering the fundamental ethical approaches influencing genetic counseling (the ethic of care and principle-based ethics) we highlight the specific ethical concerns raised by DTC genetic testing companies. Ultimately,when considering the ethics of DTC testing in a genetic counseling context, we should think of it as a balancing act. We need careful and detailed consideration of the risks and troubling aspects of such testing, as well as the potentially beneficial direct and indirect impacts of the increased availability of DTC genetic testing. As a result it is essential that genetic counselors stay informed and involved in the ongoing debate about DTC genetic testing and DTC companies. Doing so will ensure that the ethical theories and principles fundamental to the profession of genetic counseling are promoted not just in traditional counseling sessions,but also on a broader level. Ultimately this will help ensure that the public enjoys the benefits of an increasingly genetic based healthcare system.

From prenatal genomic diagnosis to fetal personalized medicine: progress and challenges

“…Now is the time to acknowledge the scientific progress that has taken place in the area of prenatal genomic medicine and consider the practical and ethical considerations raised by these technologies. Furthermore, the strong interest in and acceptance of direct-to-consumer genetic testing by many pregnant women 3–5 effectively mandates that multidisciplinary specialists should consider and discuss these issues before a ‘parallel universe’ populated by commercial interests is fully established outside of the traditional health care system.…”

Personalized Medicine, Genomics, and Pharmacogenomics

“…Increasing patient autonomy in healthcare decisions has been an ongoing trend in the industry, and this tenet is central to genomic counseling (Hawkins & Ho, 2012). However, healthcare workers must balance a patient's right to autonomy and information with the duty of non-maleficence (i.e., to do no harm).…”

“…Therefore, a very thorough informed consent process is a crucial part of the genomic counseling process (Hawkins & Ho, 2012). Debate continues about the ethics of disclosing (or not disclosing) non-actionable, yet serious, genomic risks discovered incidentally during other testing (National Public Radio, 2013).…”

“…These companies offered genetic trait analysis and risk profiles on various diseases, with tests ranging from male-pattern baldness trait to risk of developing Alzheimer disease. Although DTC companies argued that they were simply providing consumers with access to their genetic data, the FDA's decision demonstrates that the boundaries between the public, the healthcare community, and regulators are unsettled regarding access to genomic information (Hawkins & Ho, 2012;Steele & Gold, 2014).…”

A market in the making: the past, present and future of direct-to-consumer genomics

“…Reardon 2011), informed consent (e.g. Hawkins and Ho 2012), regulation and governance (e.g. Borry, Cornel, and Howard 2010) and the promissory nature of personalized medicine (e.g.…”