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Introduction One of the ethical issues surrounding birth cohort studies is how to obtain informed assent from children as they grow up. What and how parents tell their children affects children's future choices about the study, yet few studies have focused on parents’ influence on children. Objective This study examines parents’ attitudes towards telling their children about their participation in a specific birth cohort study. Methods We conducted surveys and in‐depth interviews with the parents of children who participated in the “Japan Environment and Children's Study” (JECS), which follows children from the foetal stage to age 13. Results Forty‐four mothers and 23 fathers answered the survey, and 11 mothers and 3 fathers participated in in‐depth interviews. Parents’ attitudes towards “telling” were categorized into 3 communication styles depending on their perception of the risk/benefits for their children. Most parents predicted that the study would benefit their children and preferred “directive telling,” which we divided into “empowered telling” (provides children with a positive identity as participants) and “persuasive telling” (attempts to persuade children even if they express reluctance as they grow). A few parents, weighing the study's potential risk, preferred “non‐directive telling,” which respects children's choices even if that means withdrawing from the study. Discussion While “directive telling” may lead children to have positive associations with the study, children should also be told about the risks. Investigators can provide materials that support parents and give children age‐appropriate information about their participation, as well as ensure opportunities for children to express their feelings.

The global criticism of organ trafficking and transplant tourism requires many countries to pursue legal protection of living organ donors for organ transplantation. Japan is one of the criticized countries: more than 26 000 people have become living organ donors. This paper presents an exploration of living liver transplantation in Japan from legal, social and ethical perspectives. Since the first living liver transplantation in 1989, the cases have increased, with extremely high dependency in spite of a few deaths and cases of severe disability. Government and professional guidelines stipulate that living donors be “relatives” so that living organ transplantation can be privatized and regarded as a family issue, although it is strictly limited to altruistic cases in some countries. Based on results of the Living Liver Donor Survey conducted in 2004, Japanese liver donors have had various experiences. Most male donors were employed, felt some obligation and had concerns about financial effects or employment during decision-making. In contrast, only a quarter of female donors were employed, felt guilty for their children, and did not have opportunities for regular health checkups after donation. Severe tensions and family break-up were observed in adult-to-adult cases, although donors were satisfied with donation overall. The author suggests that we should rethink privatization of living organ donation and that independent advocates should support potential donors. Further research is necessary to explore the reasons why organ donation is privatized even in some forms of cadaver cases in Japan.

As of 2008, surrogacy is legal and openly practised in various places; Japan, however, has no regulations or laws regarding surrogacy. This paper reports the situation of surrogacy in Japan and in five other regions (the USA, the UK, Taiwan, Korea and France) to clarify the pros and cons of prohibiting surrogacy, along with the problems and issues relating to surrogacy compensation. Not only in a country such as France that completely prohibits surrogacy within the country, but also in a country such as the UK that allows non-commercial surrogacy, infertile couples travel overseas for the purpose of surrogacy. In addition, some couples might seek underground surrogacy if the government prohibits surrogacy. If an intended parent couple and a surrogate make an agreement among themselves and then a problem occurs, they cannot ask for support from professionals or bring a case to court, as can be observed in South Korea and Taiwan. We also conclude that there is little difference between commercial surrogacy and non-commercial surrogacy in the absence of a clear definition of 'reasonable expenses.' In the UK, the law does not allow surrogates to receive compensation. However, in reality, there may be little difference between the amounts paid to surrogates for profit in the US and those paid to surrogates for reasonable expenses in the UK. We conclude that the issue of surrogacy demands further discussion in Japan.

The aim of this study was to assess public attitudes toward the promotion of genomic studies related to medicine and to examine the relationship between public attitudes and the level of genomic literacy by analyzing data from a nationwide opinion survey. The participants comprised 4,000 people (age, 20-69) selected from the Japanese general population by using the two-step stratified random sampling method. They were queried on the following topics in a mail survey: (1) pros and cons of the promotion of genomic studies related to medicine, (2) level of scientific literacy in genomics, (3) demographic and socioeconomic background, and (4) knowledge and attitudes toward science in general and genetic testing in particular. We examined the relationship between the approval of promotion and literacy level, using logistic regression models stratified by gender. Our results showed the response rate was 54.3% (2,171/4,000), and 69.4% participants favored the promotion of genomic studies related to medicine. Only 1.3% participants expressed a negative attitude. Multivariate analysis revealed that approval of promotion was related to a high literacy score. This relationship was stronger in males than in females (the highest quartile of score vs. the lowest: adjusted odds ratio, 3.36 for males and 1.86 for females; 95% confidence interval, 1.88-5.98 for males and 1.17-2.95 for females). We determined that a majority of the Japanese participants currently approved of the promotion of genomic studies related to medicine and that people with a high level of genomic literacy tended to approve the promotion.

The regulation of direct-to-consumer genetic testing has till now focused on identifying predispositions to specific health problems and quality issues in testing, such as analytical and clinical validity criteria. In the United States, for example, the Food and Drug Administration warned that federal regulations for medical devices will apply to commercial genetic tests for health purposes. By contrast, the regulation of commercial genetic testing for other purposes is rarely discussed. These tests are advertised as identifying intelligence, athletic ability, and artistic sensibility in children. One company offers testing for a "gold medalist gene" purportedly associated with remarkable athletic talent; in Japan, the test has been favorably featured on some television programs and is recruiting customers through the Internet. Although a link between genetic background and individual performance has been noted, we are a long way from practical application of this data. But we should anticipate global interest in the pragmatic application of genetic knowledge, especially in East Asian countries, where private spending constitutes most of education investment. Concerned with this situation, the Japan Society of Human Genetics released an amended statement on consumer genetics at the end of 2010, adding warnings against "genetic testing for minors related to ability, character and future career paths" to its original 2008 statement on direct-to-consumer genetic testing for health purposes. The amendment also demands that JSHG members more actively share their information and perspectives on emerging genetic knowledge, not only with the public, but also with childhood education experts. The statement reflects growing concerns about several ethical considerations. First, the potential impact on the tested individual's life can be profound. Test results may discourage people from considering a particular career or employment without taking into account their interests or values. Conversely, an individual with the "right" genotype may be put under more pressure to perform well. Keeping in mind that the UNESCO Universal Declaration on the Human Genome and Human Rights warns us "not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity," those who develop genetic technologies and knowledge must be aware of the potential implications on collective social values. …