It is becoming a bigger issue in the way science is moving tremendously at a shocking rate but affecting so many things. The advancement of technology, most especially in the scientific field related to the human body is allowing parents understand what they shouldn’t even before a child is born. By allowing them to map their children’s genetic code using blood samples – this they called “Genome Sequencing”. This is a great health risk for someone whose gene was fully mapped, most especially when it involves a new born.
On so many researches carried out, it had become so increased in America and many other part of the world and therefore full of ethical challenges. When parents are told up-front delivery about what their children could possibly look like, it’s definitely going to cause some chaotic experience for that family. It isn’t a new thing that many babies born in the United State could have a heel prick in the hospital, and somehow they just have to provide a spot of blood for testing at least 30 rare diseases. This process affects many children born in the year for early treatment against damage, diseases or any form of disabilities.
The former director of National Cancer Institute had said if he truly knew the system was going to be a transformative one to the medical sector, he would continually generate that information as much as he could do. Also, at Niederhuber’s Inova Translational Medicine Institute, researchers have taking the responsibility to continue this mapping process to newborns with their parents and relative around.
The experiment exposes parents up-front to what serious ailments their newborns could be faced and they also are not given the report-card of their baby’s gene, but they are given details related to the treatable or preventable ailments. This implies that parents would learn more about the possibility of their child being faced with breast-cancer or any gene that could prompt this before the child reaches adulthood.
This process was carried out on daughter Amelia, and Nurse Holly Sloan was pondering on the possibility of disseminating any bad news if there could be one. But the better news was that even after Amelia’s birth, there weren’t any results that could cause worries.
This genome sequencing has been widely used especially those ones who are so curious to know the state of their children’s health upfront delivery. For this to be done, it requires few drops of blood or cheek swab which implies that it’s only when it is carried out that it could be known if the child is healthy or not. Now the price of this operation is sliding down gradually to about $1000.
NIH encouraged that this technology can be also applicable to other necessary uses such as testing rapid gene-mapping for speeding up diagnosis of any sick babies. Another application is looking for narrow sets of genes that could be important in the childhood, most especially those involved with immune disorders. Projects at Brigham and Women’s hospital in Boston and the University of North Carolina have made it possible to admit healthy newborns for any information required by parents in the future.
Despite all advantages of the technology, researchers are not still sure if it’s a good idea and but they still need to get information that could be medically useful. But for those babies whose DNA is mapped already, researchers are still trying to understand if it’s ethical to carry out this process. Although, they know parents could likely tell their children what could have happened earlier in life but Vockley said that since it is a matter of life, then it is a good decision to go through the process.
The Ethical Principles that has been Violated
Since science permits parents to map their newborn’s hereditary code through blood tests. This enables parents to figure out, prior to the child’s birth, about related defects or health issues the infant may be burdened with. This makes for some potential ethical dilemmas and violation of ethical principles.
These problems start from the information parent should be allowed to know. For instance, parents are not supposed to be informed on any immediate life debilitating concerns or they should not be giving any notice to possible future health issues.
Abortion or adoptions are both outlets that can make this new parental and over informed process ethically questions. When parents are aware that their child would be mentally unbalanced or autistic months before the delivery due date, there would be possibility of abortion to be increased tremendously. Furthermore, if parents were very much informed of their child’s health concerns it would vigorously impact their choice on having the child. Because of the monetary and health consequences of an infant, particularly one that is unhealthy, the child’s condition would intensely impact a struggling parent’s choice on whether to keep their child or not.
Diversity Implications that are Involved
The progress in genomic technologies, for example, DNA arrays and also next-generation sequencing, is permitting systematic characterization the level of human hereditary variation at the size of individual genomes. Many public efforts, such as, the International HapMap Project and the 1000 Genomes Project, have given a sensible picture of the levels of hereditary diversity in in people and particularly newborns. These genomic strategies are likewise making it possible to assess the contribution of host genetic diversity to contrasts in susceptibility to both uncommon and common infectious diseases. Studies have shown that the power of entire-exome sequencing for dissecting the immunological mechanisms hidden the pathogenesis of serious, uncommon infectious diseases. In like manner, genome-wide association has seen this ethical issue and they have considered the implications and then continually study bacterial, common viral and parasitic infections which have revealed insight into the host genetic basis of susceptibility to irresistible infections.
A Mitigation Strategy for the Ethical Issue
A strategy to help mitigate the sequencing is using the next-generation sequencing (NGS) technologies which have turned out to be significantly more proficient, permitting entire human genomes to be sequenced speedier and less expensive than at ever before. However, handling the raw sequence reads connected with NGS innovations requires consideration and complexity keeping in mind the end goal to draw convincing deductions about phenotypic results of variety in human genomes. It has been demonstrated that diverse ways to deal with variation from NGS information can prompt distinctive conclusions. Guaranteeing proper precision and quality in variation calling can come at a computational expense.
- A Genome-Wide Perspective of Human Diversity and Its Implications in Infectious Disease. (2013). Retrieved October 19, 2015, from https://perspectivesinmedicine.cshlp.org/content/3/1/a012450.full
- Ethical issues arise as scientists peek into baby genes. (2013, October 7). Retrieved October 19, 2015, from https://www.foxnews.com/health/2013/10/07/ethical-issues-arise-as-scientists-peek-into-baby-genes/
- Ethical issues as scientists peek into baby genes. (2013). Retrieved October 19, 2015, from https://www.today.com/health/ethical-issues-scientists-peek-baby-genes-8C11349733
- Group-based variant calling leveraging next-generation supercomputing for large-scale whole-genome sequencing studies. (2015). Retrieved October 19, 2015, from https://www.biomedcentral.com/1471-2105/16/304
- Whole-genome sequencing in newborn screening? A statement on the continued importance of targeted approaches in newborn screening programmes. (2015) Retrieved October 19, 2015, from https://www.nature.com/ejhg/journal/vaop/ncurrent/full/ejhg2014289a.html