According to a recent article published in The Atlantic, the House Committee on Education and the Workforce recently approved H.R. 1313, a bill that would allow employers to pressure their employees to undergo genetic testing and share the results as part of an employer’s “workplace wellness program.” If an employee opts not to share the results, he or she could be forced to pay significantly more for health insurance.
Proponents of the bill note that it simply builds on programs already in place from the Affordable Care Act; however, critics are worried that the bill will take away many of the privacy, discrimination and insurance protections of the Genetic Information Non-Discrimination Act (“GINA”).
From The Atlantic, “The GOP’s New Bill Would Seriously Disrupt Genetics Research”
Excerpt from article:
“‘People are already being discriminated genetically without mandatory genetic testing—that’s what sexism and racism is . . . . This [bill] would result in a higher resolution of discrimination and more individualized ways of targeting people.’ The dark mirror of personalized medicine is personalized discrimination.”
According to an article published by CNN, dated September 28, 2016, on April 6, a baby was born with DNA from three people by using a new technique called “spindle nuclear transfer.” A team of doctors from New York went to Mexico to conduct the procedure since the Food and Drug Administration has not approved spindle nuclear transfer in the United States. Some are saying that this baby is the first to be born through this procedure, but critics state that the procedure produced children in the “1990s/early 2000s before the FDA” began to regulate it.
From Cnn.com, “Controversial 3-parent baby technique produces a boy”
Excerpt from article:
While in the past, the procedure was used to help women conceive and give birth to healthy babies in cases of infertility, the new version was created to tackle a specific problem: mitochondrial mutations.
In an article dated September 22, 2016, it was revealed that a Swedish scientist has become the first known researcher to begin attempts to modify genes in healthy human embryos—a practice which has been, and for many still is, considered “taboo.” Critics are concerned that people will begin to use such technology to create “designer” babies, or that such research could unintentionally create a new genetic disease; however, the scientist involved says he plans to use the embryos for no more than 14 days, in which time he may be able to discover new ways to treat infertility, prevent miscarriages, and use stem cells to treat various diseases.
From NPR.org, “Breaking Taboo, Swedish Scientist Seeks to Edit DNA of Healthy Human Embryos”
Excerpt from article:
“Lanner is planning to methodically knock out a series of genes that he has identified through previous work as being crucial to normal embryonic development. He hopes that will help him learn more about what the genes do and which ones cause infertility.”
This article reports on a study showing that the method of childbirth might affect that child’s weight well into adulthood. Babies who were delivered by caesarean have a 15% higher risk of being obese than babies who were delivered vaginally. The article suggests causative links, but the study did not prove that a caesarean section is a cause of obesity.
From TheGuardian.com, “Babies born by caesarean more likely to be obese as adults, study suggests”
Excerpt from article:
“Birth by caesarean was linked to a 15% higher risk of obesity in children compared with vaginal birth.”
Amid heated debate over the ethics of gene modification, Chinese researchers have been the first to report successfully editing the genome of human embryos. Though non-viable by design, the embryos have heritable traits. Were edited embryos used in reproduction, the genomic changes could affect future generations.
Researchers at Sun Yat-sen University in Guangzhou, led by Junjiu Huang, utilized the CRISPR/Cas9 gene editing technique to modify the genes that control a rare blood disorder, β-thalassaemia. The process was performed on embryos created for in vitro fertilization that had an extra set of chromosomes, thus precluding live birth.
This research has reignited the debate on gene modification. Critics are concerned that gene modification on human embryos could lead to unsafe and unethical practices. Moreover, the technique that was used has shown inefficiencies – out of 100 embryos, 71 survived and 54 were genetically tested; out of those that were tested only 28 were successfully spliced. Nonetheless, the CRISPR/Cas9 technique is easy to use, and continued research in this area seems likely. Four groups in China are pursuing similar embryonic research.
From science fiction to fiction: the ability to choose your genes and your children’s genes is on the horizon and it has raised some serious concerns. Burgeoning advancements in genetic science have sparked widespread discussions. The UN’s International Bioethics Committee (IBC) has issued a report that focuses on the moral and practical implications of gene manipulation. The benefits of genomic “editing” are well known. Today’s scientists can now edit a person’s genome to treat or even cure illnesses. But many scientist, government ministers, and lawyers agree that this raises serious moral questions, including concerns about scientists “play[ing] god.” But morality is not the only concern. Genetic editing, particularly when applied to the germline, can change inherited traits, leading to unforeseeable consequences for future generations.
In addition, the IBC is concerned with direct-to-consumer genetic test kits. These kits come at a price, informed consent. Those who take the test, and learn about their own DNA often lack the medical and genetic counseling to react knowledgeably to the test results. The IBC report has called for a moratorium until proper public debate can consider the risks and the benefits of genomic editing. Nevertheless, the line between science fiction and science is wearing thin.
Several new companies have introduced genetic tests aimed at making treatment of psychiatric illnesses more predictable and effective. Test makers assert that psychiatric genetic testing minimizes patients’ risk of adverse side effects by enabling physicians to select appropriate medications with less trial and error. However, a recent investigative report conducted by the New England Center for Investigative Reporting (the “Report”) raises significant questions about the effectiveness of these genetic tests.
Among the concerns raised in the Report, the lack of independent oversight and financial conflicts of interest are the most serious. The Report suggests that test makers may be overstating findings and have failed to seek outside review of their unproven products. The Report also alleges that financial incentives may be causing improper referrals because test makers have been paying medical professionals to speak favorably about their tests, which have yet to be proven effective. Furthermore, as a result of a highly controversial FDA exemption, the majority of these genetic tests have been introduced into the marketplace without FDA review. Although the FDA recently announced plans to regulate these tests, no timeline has been established.
Despite the ethical concerns raised in the report, psychiatric genetics may still hold the key to unlocking a definitive approach for identifying the drugs most likely to be effective for individuals suffering from a multitude of psychiatric conditions. Only time will tell if the analysis of an individual’s genetic make-up can be used to effectively determine drug response.
Prominent “gene editing” scientists have called for a freeze on genetic experiments that alter the DNA of human sperm, eggs and embryos. Concern in the scientific community spread following publication of an article in the MIT Technology Review that chronicled efforts of three groups to genetically alter human embryos.
The concerned scientists published a plea titled “Don’t edit the human germ line” in the journal Nature (the article can be viewed at http://www.nature.com/news/don-t-edit-the-human-germ-line-1.17111). This group of scientists is involved in experiments involving genome-editing in non-reproductive cells. They fear that unlike their work, the implications of editing the DNA of human embryos will have irreversible repercussions that could be passed to future generations. They note that modifying the DNA of human reproductive cells could be used for cosmetic rather than therapeutic purposes. This raises ethical and safety concerns.
The scientists call for an agreement within the community to ban modifying the DNA of human reproductive cells.
BMC Medicine, an open-access, online medical journal, recently published the results of a study indicating that stress during pregnancy may stretch across generations. Researchers subjected late-term, pregnant rats to high levels of stress, which in turn caused shorter pregnancies. Then, the researchers separated the next two generations of female rats into two groups. Group one was subjected to stress during pregnancy; group two was not subjected to stress. Both groups showed shorter pregnancies than rats whose ancestors were not stressed during their pregnancies. Thus, the study suggests that stress during pregnancy can be passed along to future generations, even causing shorter pregnancies for mothers who did not suffer high amounts of stress during pregnancy.
It has been fifteen years since MIT professor John Essigmann proposed that in order to fight HIV, drugs should be developed that drastically increase the rate of the virus’ mutation. Essigmann’s idea has lead to the current use of inhibitors (drugs that force cells to mutate so quickly they weaken) for HIV treatment. Once HIV infects a cell, it “rapidly makes copies of its genetic material.” Rapid copying causes errors allowing the virus to mutate quickly and evade the immune system. Essigmann hypothesized that the virus could be starved of essential proteins if the mutation process is increased to an even more rapid pace, eventually killing the virus. Current HIV treatments fight the virus using Essigmann’s 15-year old idea of forcing cells to mutate at unsustainable rates, but researchers have not yet been able to completely “cure” patients.