If the genomic data are publicly available, there is a risk of discrimination when registering for a job or taking out health insurance. Individuals could be denied a job or insurance policy based on genetic information that suggests a risk of vulnerability to chronic disease or cancer. At the time of the first informed consent to participate in research, the individual subject gives consent based on autonomy to sequence their genome. International regulatory landscape and integration of corrective genome editing in
in vitro fertilization.
Table 2 shows ELSI research areas that have been identified as “major challenges for the future of genomic research.” Clinically speaking, NDS often occur simultaneously, and advances in genomic research also imply shared genetic risk factors. Bioethicists and researchers generally believe that editing the human genome for reproductive purposes should not be attempted at this time, but that studies that would make gene therapy safe and effective should continue. NIH is currently setting up mechanisms to monitor the NIH GWAS Data Repository, monitor data usage practices, and explore the evolving ethical issues that are fundamental to implementing the policy. This includes improving researchers’ informed consent to share GWAS data
(U.
induced pluripotent stem cells offer the opportunity to study diseases in relevant tissues, which is particularly advantageous for diseases in the brain. This provides a unique opportunity to reflect on the ethical, legal, and social challenges associated with this next generation of personalized genomics. They had the foresight to spend 3-5% of their annual Human Genome Project (HGP) budget on investigating the ethical, legal and social issues (ELSI) related to the availability of genetic information. We have reviewed the literature on ethical issues related to genomic research involving children affected by NDS to help researchers better anticipate ethical concerns
and respond to it.
Genetic discrimination was identified early in the human genome project by the Ethical, Legal and Social Implications program of the National Human Genome Research Institute as an ethical issue that had to be addressed before the benefits of the human genome project could be fully implemented. In addition, as media coverage intensifies 1,17, the commercial market for genome sequencing grows (see e.g. the 23andMe website) and direct marketing for genetic testing to consumers is becoming more common18, the need for information and expectations of research participants to receive their results are likely to increase. In nursing practice, genetics and genomics are increasingly being integrated into their range of treatments, which also includes taking ethical issues into account. Ethical considerations are of paramount importance for genomic research, which is at the heart of the MindDS network, particularly in connection with
rare early-stage brain diseases
.Table 3 presents genetic and genomic competencies in the professional tasks and areas of practice of nurses, which nurses should integrate into their education and practice. As research into the personal genome progresses, researchers should expect research participants to start asserting their
right of access
.