Ethical and Social Impacts of Genomics and Genetic Engineering

Socio-Economic Impacts of Aging Populations

  • The Welsh Government is considering tax rises to address growing care costs for the elderly and disabled as the population of over-70s70\text{s} and over-85s85\text{s} increases.

  • Currently, the population of individuals aged over-8585 in Wales consists of just under 85,30085,300 people.

  • The predicted cost for adult social care in Wales is expected to reach approximately £2.4 billion£2.4\,\text{billion}.

Gene Editing and CRISPR Technologies

  • CRISPR/Cas9 technology allows for DNA editing in human embryos and has been used to modify genes associated with blood disorders and HIV resistance.

  • The first team to use CRISPR/Cas9 in human embryos to alter the gene causing a blood disorder was published in Protein & Cell on 18 April 201518\,\text{April}\,2015.

  • The Francis Crick Institute in the UK received a license for early-development research using CRISPR/Cas9 in human embryos.

  • The FDA approved Luxturna in 20172017 as the first gene therapy for treating an inherited genetic mutation causing blindness.

Findings from Personal Genome Sequencing

  • The Personal Genome Project Canada released findings from its inaugural 5656 participants in 20182018.

  • One-quarter (1414 out of 5656 participants) possessed genetic variants associated with cancer, cardiovascular disease, or neurological disease.

  • 23%23\% of participants (1313 individuals) were at risk of life-threatening adverse drug reactions.

  • Direct-to-consumer (DTC) tests, such as AncestryDNA (£79£79) and 23andMe, are criticised by experts for the risk of "false reassurance" or unnecessary anxiety without proper genetic counselling.

Ethical and Legal Challenges in Genomics

  • Cost disparities may lead to inequalities in healthcare, with for-profit "big pharma" providing limited incentives for addressing health problems in developing countries.

  • The deCODE project in Iceland utilised the nation's genetic homogeneity for gene isolation, leading to a $200\,\text{million}dealwithHoffmann−LaRocheindeal with Hoffmann-La Roche in 1998.\n- A legal challenge by Ragnhildur Gudmundsdottir in 2003 resulted in an Icelandic Supreme Court ruling protecting her deceased father's medical records from the deCODE database based on privacy rights.\n\n# Informed Consent and Privacy Concerns\n\n- Informed consent in genetic research should meet international standards while remaining sensitive to local community practices, particularly in developing countries.\n- Genetic information is distinct because it involves entire families and can be used to predict future health, leading to potential discrimination in insurance or employment.\n- In certain cultural contexts, such as Aboriginal groups, genetic study is often treated as a community matter rather than solely an individual concern.\n\n# Behavioral Genetics and Stigmatization\n\n- The Nuffield Council on Bioethics highlights the need for public debate regarding research into how genes influence behavioral traits like aggression, intelligence, and sexual orientation.\n- Concerns exist regarding the CCR5 gene deletion performed by He Jiankui on the twins Lulu and Nana; while aimed at HIV resistance, the deletion is also linked to enhanced cognition and memory.\n- Genetic research can reveal unexpected data, such as misattributed paternity or unrevealed adoptions, causing undue stress to families.\n\n# Eugenics and Genetic Enhancement\n\n- Historical eugenics movements used racial or class prejudices to define "fit" and "unfit" individuals. \n- A 1937FortunepollfoundthatFortune poll found that\frac{2}{3}ofrespondentssupportedtheeugenicsterilizationof"mentaldefectives,"andof respondents supported the eugenic sterilization of "mental defectives," and63\% supported it for criminals.\n- Genetic enhancement of "all-purpose means" like memory or the immune system is debated as either a benefit or a tool for further social inequality.\n- "Gene doping" in sports is exemplified by the Finnish family with an EPO mutation that boosts red blood cell production, helping them win endurance sports championships.\n\n# Biohacking and DIY Biology\n\n- California passed the first law in the U.S. in 2019 to prevent genetic biohacking by restricting the sale of home gene therapy kits.\n- Biohacking ranges from self-prescribed pharmaceuticals for cognitive performance to installing cybernetic implants.\n\n# Questions & Discussion\n\n- Scenario: As an Ethics Review Board for a public hospital, should Pre-implantation Genetic Diagnosis (PGD) be permitted for the following?\n - To help two cystic fibrosis (CF) carriers avoid passing the disease to their child.\n - To help a couple produce umbilical cord cells for an existing child with Fanconi’s anemia (incidence rate: \frac{1}{350,000}$$ births).

    • To help a couple select the sex of their child for "family balancing."

    • To help a short couple produce a taller child.