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All is changed – changed utterly
Published in Brendan Curran, A Terrible Beauty is Born, 2020
Germ-line gene therapy will almost certainly become available; for some neurological disorders such as Tay Sachs disease and Huntington’s chorea, it may be the only way to alleviate the condition. Can we really deny it to the families of such individuals? If allowed, germ-line gene therapy could genetically repair many medically important conditions, minimise the number of patients seeking somatic gene therapy and theoretically produce a population of individuals devoid of a negative genetic legacy. Yet ‘negative’ is a relative term; we have insufficient knowledge to assess the usefulness or not of many apparent mutations. Our definition of dysfunction is very subjective and history is littered with the corpses of millions of unfortunate individuals whose genes did not fit into the then prevailing political framework. Despite their many drawbacks, humans face these moral dilemmas at the start of the twenty-first century because we are great survivors and innovators. A population is greater than the sum of its individual parts and, the greater its diversity, the greater its flexibility. Humans have gone from swinging stone-age clubs to swinging golf clubs 250,000 miles above the earth, not despite, but because of the combination of genes (‘good’ and ‘bad’) that we collectively possess. Let us tread carefully, very carefully, lest this power seduce us into creating a population devoid of individuality – clones of nothing greater than the lowest genetic common denominator.
Challenges Facing the American Healthcare System
Published in Kant Patel, Mark Rushefsky, Healthcare Politics and Policy in America, 2019
There are two basic types of gene therapy. One is somatic gene therapy, where therapeutic genes are transferred into somatic cells of a patient. Here, the modification of the gene and its effects are restricted to the individual patient and will not be inherited by the patient’s offspring or later generations. The second type of gene therapy is germline gene therapy, in which germ cells (sperm or eggs) are modified by introducing a functional gene that is integrated into the patent’s genome. Under this method, changes made are heritable and would be passed on to later generations (Singh et al. 2016).
Connecting lines from an ethical point of view
Published in Elisabeth Hildt, Dietmar Mieth, In Vitro Fertilisation in the 1990s, 2018
Clearly, PID and human gene therapy make us aware of our responsibility to future generations. But it remains difficult to clarify how is to be integrateted the well-being of future generations. I must therefore stress once again the need for a careful risk assessment, in agreement with the Report on the Ethical Implications of Biotechnoloy, by the Group of Advisors to the European Commission (1996, p.17): Because of its present risk assessment, somatic gene therapy should be restricted to serious diseases for which there is no other effective available treatment… Because of the important controversial and unprecedented questions raised by germ-line therapy, and considering the actual state of die art, germline gene therapy on humans is not at the present time ethically acceptable.
Perceptions of airway gene therapy for cystic fibrosis
Published in Expert Opinion on Biological Therapy, 2023
Martin Donnelley, David Parsons, Ivanka Prichard
To date, only two studies have specifically examined perceptions of gene therapy for CF. In 2003 Iredale et al. performed a qualitative pilot study to examine the attitudes of people with CF and members of the public [16]. They found support for somatic gene therapy, and hesitancy about germline gene therapy, as well as opposition to gene therapy for enhancement purposes. In 2006 Jaffe et al. performed a short seven question single-center quantitative study that examined parental attitudes toward gene therapy for children with CF in the UK [15]. They found that parents of children with CF reported that gene therapy was an important part of CF research, however safety was still considered a major issue, especially when considering gene therapy for children. While important, these two studies only provide information on the opinions of small populations (N = 22 and N = 80, respectively) from 15+ years ago, well before gene therapies had experienced success across a range of other diseases.
Maternal spindle transfer for mitochondrial disease: lessons to be learnt before extending the method to other conditions?
Published in Human Fertility, 2022
Charalampos Siristatidis, Themis Mantzavinos, Nikos Vlahos
We performed a literature search in Pubmed, following linked references; the key words were the following: ‘cytoplasmic transfer; oocyte spindle transfer; germline; oocyte quality; mitochondrial disease; mitochondrial replacement; gene editing; ethics; pronuclear transfer; maternal spindle transfer; three parent IVF; mtDNA; germ line gene therapy; spindle chromosome transfer’.