Who's Afraid of the Big Bad (Germline Editing) Wolf?

Germline genome editing has garnered dire predictions about its societal effects, but experience with other reproductive technologies should caution us about making extravagant claims. Amniocentesis was predicted to result in increased stigmatization of people born with Down syndrome, but in fact people with these conditions have been increasingly integrated into schools and workplaces. Artificial insemination by donor was predicted to result in women choosing to "optimize" their children, but in fact most women eschewed the offerings of the so-called "genius sperm bank," and when choosing among donors, have tended to look for those who most resemble their husbands and partners. IVF was predicted to cause parents to view children as commodities, but no such change has been evidenced. Preimplantation genetic diagnosis was predicted to become widespread and used for an ever-increasing range of conditions, including those unrelated to serious disease or shortened life span, but this has not happened either. Critics of germline genome editing have argued that even if it were safe and effective, it would inevitably be abused by prospective parents who wish to improve upon what is already predicted to be a healthy outcome, and that this practice would become sufficiently widespread among those able to afford it that we would be creating a new genetic caste system. Before developing policy around such predictions, it is important to learn from the past.

An Ethical Framework for Research in Maternal-Fetal Intervention in the Presence of Maternal Human Immunodeficiency Virus or Hepatitis B and C Infection.

Maternal-fetal interventions continue to be a groundbreaking and rapidly expanding area. In this article, we examine whether it is ethically permissible to conduct investigation into the expansion of inclusion criteria for existing maternal-fetal interventions to include pregnant patients with human immunodeficiency virus (HIV) and hepatitis B or C infection with low or undetectable viral loads. We addressed this ethical question by appealing to ethical principle of respect for the autonomy of the pregnant patient; the patient status of the fetus; the balance of overall benefits and risks of the procedure(s) to pregnant, fetal, and neonatal patients; and to the ethical principle of justice. The ethical framework we have provided supports the conclusion that research on maternal-fetal interventions with pregnant women with HIV and hepatitis B and C infection with low or undetectable viral loads is ethically permissible. To accumulate sufficient numbers, such research should be multicenter.

Considering medical risk information and communicating values: A mixed-method study of women's choice in prenatal testing.

INTRODUCTION: Nowadays, an important decision for pregnant women is whether to undergo prenatal testing for aneuploidies and which tests to uptake. We investigate the factors influencing women's choices between non-invasive prenatal testing (NIPT) and invasive prenatal tests in pregnancies with elevated a priori risk of fetal aneuploidies. METHODOLOGY: This is a mixed-method study. We used medical data (1st Jan 2015-31st Dec 2015) about women participating in further testing at Fetomaternal Medical Center at Helsinki University Hospital and employed Chi-square tests and ANOVA to compare the groups of women choosing different methods. Multinomial logistic regressions revealed the significant clinical factors influencing women's choice. We explored the underlying values, beliefs, attitudes and other psychosocial factors that affect women's choice by interviewing women with the Theory of Planned Behavior framework. The semi-structured interview data were processed by thematic analysis. RESULTS: Statistical data indicated that gestational age and counseling day were strong factors influencing women's choice. Interview data revealed that women's values and moral principles on pregnancy and childbirth chiefly determined the choices. Behavioral beliefs (e.g. safety and accuracy) and perceived choice control (e.g. easiness, rapidness and convenience) were also important and the major trade-offs happened between these constructs. DISCUSSION: Values are the determinants of women's choice. Service availability and convenience are strong factors. Medical risk status in this choice context is not highly influential. Choice aids can be developed by helping women to identify their leading values in prenatal testing and by providing lists of value-matching test options and attributes.

Genetics and bioethics: how our thinking has changed since 1969.

In 1969, the field of human genetics was in its infancy. Amniocentesis was a new technique for prenatal diagnosis, and a newborn genetic screening program had been established in one state. There were also concerns about the potential hazards of genetic engineering. A research group at the Hastings Center and Paul Ramsey pioneered in the discussion of genetics and bioethics. Two principal techniques have emerged as being of enduring importance: human gene transfer research and genetic testing and screening. This essay tracks the development and use of these techniques and considers the ethical issues that they raise.

Effect of religion on the attitude of primiparous women toward genetic testing.

BACKGROUND: Factors that influence a pregnant woman's decision to accept or decline genetic tests are largely undefined. The objective of this study was to determine the acceptance rate of prenatal diagnostic testing in Lebanon according to religion. METHODS: Prenatal charts were reviewed to obtain information about prenatal genetic testing. Women were divided according to their religion and were compared regarding the acceptance of triple screen test (TST) or amniocentesis (AMN) and reasons for declining such tests. Differences between groups were examined using the student's t-test, chi(2)-test and multivariate analysis (age >or= 35 years, religion, education and class). RESULTS: The religious distribution was 73.8% Moslems, 14.0% Christians and 11.2% Druze. Utilization of TST, AMN, and either (TST/AMN) was 61.2%, 7.6% and 67.0%, respectively. Uptake of TST/AMN was highest in Christians and lowest in Moslems and that of AMN higher in Christians >or= 35 years compared with Moslems. On multivariate analysis, none of the factors studied significantly affected the utilization of TST or TST/AMN except for age >or= 35 years which was associated with a borderline decrease in the utilization of TST Odds Ratio (OR) 0.485 (95% CI 0.21-1.12). The utilization of AMN significantly increased with age >or= 35 years OR 7.19 (95% CI 2.65-19.56) and lower education. CONCLUSION: Religion does not seem to affect utilization of prenatal diagnostic tests in Lebanon.