Ethical dangers of facial phenotyping through photography in psychiatric genomics studies.

Psychiatric genomics research protocols are increasingly incorporating tools of deep phenotyping to observe and examine phenotypic abnormalities among individuals with neurodevelopmental disorders. In particular, photography and the use of two-dimensional and three-dimensional facial analysis is thought to shed further light on the phenotypic expression of the genes underlying neurodevelopmental disorders, as well as provide potential diagnostic tools for clinicians. In this paper, I argue that the research use of photography to aid facial phenotyping raises deeply fraught issues from an ethical point of view. First, the process of objectification through photographic imagery and facial analysis could potentially worsen the stigmatisation of persons with neurodevelopmental disorders. Second, the use of photography for facial phenotyping has worrying parallels with the historical misuse of photography to advance positive and negative eugenics around race, ethnicity and intellectual disability. The paper recommends ethical caution in the use of photography and facial phenotyping in psychiatric genomics studies exploring neurodevelopmental disorders, outlining certain necessary safeguards, such as a critical awareness of the history of anthropometric photography use among scientists, as well as the exploration of photographic methodologies that could potentially empower individuals with disabilities.

Genomic Essentialism: Its Provenance and Trajectory as an Anticipatory Ethical Concern.

Since the inception of large-scale human genome research, there has been much caution about the risks of exacerbating a number of socially dangerous attitudes linked to human genetics. These attitudes are usually labeled with one of a family of genetic or genomic "isms" or "ations" such as "genetic essentialism," "genetic determinism," "genetic reductionism," "geneticization," "genetic stigmatization," and "genetic discrimination." The psychosocial processes these terms refer to are taken to exacerbate several ills that are similarly labeled, from medical racism and psychological fatalism to economic exploitation and social exclusion. But as genomic information becomes more familiar in clinical and research settings as well as other life activities, do we need to continue to worry so much about this family of attitudes and their impact on existing problems? In genomics, the underlying anxiety has been that disclosure of genomic information will trigger a series of (seemingly unavoidable) negative responses that will affect individuals, their families, and their communities at large. The fundamental social challenges that hyperbolic genomic messaging, low genomic literacy, and "folk biology" help sustain remain to be addressed. If we hope to break the cycle of genomic isms and ations, we will have to get better at resisting overinterpretations of the relevance that genomics has for people's future potentials, ancestral vulnerabilities, community memberships, and ethnic affiliations.

How Can Law Support Development of Genomics and Precision Medicine to Advance Health Equity and Reduce Disparities?

There is growing recognition that the genomic and precision medicine revolution in health care can deepen health disparities. This has produced urgent calls to prioritize inclusion of historically underrepresented populations in research and to make genomic databases more inclusive. Answering the call to address health care disparities in the delivery of genomic and precision medicine requires a consideration of important, yet understudied, legal issues that have blocked progress. This article introduces a special issue of Ethnicity & Disease which contains a series of articles that grew out of a public conference to investigate these legal issues and propose solutions. This 2018 conference at Meharry Medical College was part of an NIH-funded project on "LawSeqSM" to evaluate and improve the law of genomics in order to support appropriate integration of genomics into clinical care. This conference was composed of presentations and interactive sessions designed to specify the top legal barriers to health equity in precision medicine and stimulate potential solutions. This article synthesizes the results of those discussions. Multiple legal barriers limit broad inclusion in genomic research and the development of precision medicine to advance health equity. Problems include inadequate privacy and anti-discrimination protections for research participants, lack of health coverage and funding for follow-up care, failure to use law to ensure access to genomic medicine, and practices by research sponsors that tolerate and entrench disparities. Analysis of the legal barriers to health equity in precision medicine is essential for progress. Progressive use of law is vital to avoid worsening of health care disparities.

La genética y la dignidad del ser humano / The genetics and the dignity of the human being

Los elementos biológicos del hombre no son suficientes para afrontar las cuestiones bioéticas que se plantean en torno al concepto de persona, pero son necesarios para definir con precisión las propiedades de los seres humanos y los aspectos teológicos, filosóficos y jurídicos que son atribuibles a cada persona. El ser humano es un ser singular. En él que conviven dos dimensiones de distinta naturaleza, una material y otra espiritual, y precisamente esta es la principal de las diferencias entre el hombre y el resto de seres vivos. Pero además en el hombre aparece una nueva característica, única entre los seres vivos, la componente ética. Los valores y pautas del comportamiento moral y ético del ser humano deben considerarse de origen natural ya que han contribuido al éxito y supervivencia de la especie. El hombre no es solo Homo sapiens sino también Homo moralis. El reconocimiento de culpa, autodominio, solidaridad, amor, generosidad, altruismo y honestidad, entre otras, son cualidades innatas en los seres humanos. La antropología filosófica destaca el carácter único e irrepetible propio de cada ser humano, cada persona. Esto coincide plenamente con los datos de la ciencia, que destaca la identidad genética individual y singular de cada ser humano (AU)

The biological elements of man are not sufficient to confront the bioethical questions around the person concept, but are necessary to accurately define the properties of the human beings and the theological, philosophical and legal aspects that are attributable to each person. The human being is a singular being. Indeed, the coexistence of two dimensions of different nature, material and spiritual, is the most important difference between the man and the rest of living beings. Moreover, in man appears a new characteristic, unique between the living beings, the ethical component. The values and guidelines of the moral and ethical behavior of the human being must be considered of natural origin since they have contributed to the success and survival of the species. The man is not only Homo sapiens but also Homo moralis. The recognition of fault, self-control, solidarity, love, generosity, altruism and honesty, among others, are innate qualities in the human beings. The unit of the human species demands the respect and the consideration of the same dignity for all its members, but only for its members. The philosophical anthropology emphasizes the singularity of each human being, each person. This agrees totally with the data of the science, which emphasize the individual and singular genetic identity of each human being (AU)