Sara Goering

Transforming genetic research practices with marginalized communities: A case for responsive justice

Genetics researchers often work with distinct communities. To take moral account of how their research affects these communities, they need a richer conception of justice and they need to make those communities equal participants in decision-making about how the research is conducted and what is produced and published out of it.

Postnatal Reproductive Autonomy: Promoting Relational Autonomy and Self-Trust in New Parents

New parents suddenly come face to face with myriad issues that demand careful attention but appear in a context unlikely to provide opportunities for extended or clear-headed critical reflection, whether at home with a new baby or in the neonatal intensive care unit. As such, their capacity for autonomy may be compromised. Attending to new parental autonomy as an extension of reproductive autonomy, and as a complicated phenomenon in its own right rather than simply as a matter to be balanced against other autonomy rights, can help us to see how new parents might be aided in their quest for competency and good decision making. In this paper I show how a relational view of autonomy--attentive to the coercive effects of oppressive social norms and to the importance of developing autonomy competency, especially as related to self-trust--can improve our understanding of the situation of new parents and signal ways to cultivate and to better respect their autonomy.

Staying in the Loop: Relational Agency and Identity in Next-Generation DBS for Psychiatry

In this article, we explore how deep brain stimulation (DBS) devices designed to “close the loop”—to automatically adjust stimulation levels based on computational algorithms—may risk taking the individual agent “out of the loop” of control in areas where (at least apparent) conscious control is a hallmark of our agency. This is of particular concern in the area of psychiatric disorders, where closed-loop DBS is attracting increasing attention as a therapy. Using a relational model of identity and agency, we consider whether DBS designed for psychiatric regulation may require special attention to agency. To do this, we draw on philosophical work on relational identity and agency, connecting it with reports from people using first-generation DBS devices for depression and obsessive-compulsive disorder. We suggest a way to extend a notion of relational agency to encompass neural devices.

Values in Translation: How Asking the Right Questions Can Move Translational Science Toward Greater Health Impact

The speed and effectiveness of current approaches to research translation are widely viewed as disappointing given small gains in real population health outcomes despite huge investments in basic and translational science. We identify critical value questions—ethical, social, economic, and cultural—that arise at moments throughout the research pathway. By making these questions visible, and promoting discussion of them with diverse stakeholders, we can facilitate handoffs along the translational pathway and increase uptake of effective interventions. Who is involved with those discussions will determine which research projects, populations, and methods get prioritized. We argue that some upfront investment in community and interdisciplinary engagement, shaped by familiar questions in ethics, social justice, and cultural knowledge, can save time and resources in the long run because interventions and strategies will be aimed in the right direction, that is, toward health improvements for all. Clin Trans Sci 2012; Volume 5: 445–451

Four ethical priorities for neurotechnologies and AI

Artificial intelligence and brain–computer interfaces must respect and preserve peoples privacy, identity, agency and equality, say Rafael Yuste, Sara Goering and colleagues.

Rethinking disability: the social model of disability and chronic disease

Disability is commonly viewed as a problem that exists in a person’s body and requires medical treatment. The social model of disability, by contrast, distinguishes between impairment and disability, identifying the latter as a disadvantage that stems from a lack of fit between a body and its social environment. This paper describes the social model of disability and then considers how it might deal with chronic disease or impairment and why medical professionals should learn about disability perspectives to improve their practice.

Brain-computer interface-based control of closed-loop brain stimulation: attitudes and ethical considerations

Patients who have undergone deep brain stimulation (DBS) for emerging indications have unique perspectives on ethical challenges that may shape trial design and identify key design features for BCI-driven DBS systems. DBS research in cognitive and emotional disorders has generated significant ethical interest. Much of this work has focused on developing ethical guidelines and recommendations for open-loop DBS systems. While early trials of open-loop DBS for depression gave disappointing results, research is moving toward clinical trials with closed-loop or patient-controllable DBS systems that may modulate aspects of personality and emotion. Though user-centered design is an increasingly important principle in neurotechnology, the perspectives of implanted individuals on ethical issues raised by DBS are poorly understood. We solicited those perspectives through a focus group and set of qualitative interviews of participants in trials of DBS for depression and obsessive-compulsive disorder. We identified f...

Revisiting the Relevance of the Social Model of Disability

The authors of “Ashley Revisited: A Response to the Critics,” Diekema and Fost (2010) attempt to address so many arguments that they are simply unable to fully grapple with some of the more signifi...

Gene therapies and the pursuit of a better human.

As a philosopher interested in biomedical ethics, I find recent advances in genetic technologies both fascinating and frightening. Future technologies for genetic therapies and elimination of clearly deleterious genes offer us the ability to get rid of the cause of much human suffering, seemingly at its physiological root. But memories of past eugenics programs gone horribly awry (whether we speak of Hitlers program, California sterilization laws and practices of the 1920s, or even contemporary practices, such as attempts to work out deals that exchange sterilization for early prison release) must make cautious our initial optimism for these generally well-intentioned programs. Most often the scientist proceeds in research with the best of intentions, but that does not make all scientific investigation worth pursuing.

Engineering the Brain: Ethical Issues and the Introduction of Neural Devices

Neural devices now under development stand to interact with and alter the human brain in ways that may challenge standard notions of identity, normality, authority, responsibility, privacy and justice.