| 1. |
- Middleton, Anna, et al.
(author)
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Direct-to-consumer genetic testing : where and how does genetic counseling fit?
- 2017
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In: Personalized Medicine. - : FUTURE MEDICINE LTD. - 1741-0541 .- 1744-828X. ; 14:3, s. 249-257
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Journal article (peer-reviewed)abstract
- Direct-to-consumer genetic testing for disease ranges from well-validated diagnostic and predictive tests to 'research' results conferring increased risks. While being targeted at public curious about their health, they are also marketed for use in reproductive decision-making or management of disease. By virtue of being 'direct-to-consumer' much of this testing bypasses traditional healthcare systems. We argue that direct-to-consumer genetic testing companies should make genetic counseling available, pre- as well as post-test. While we do not advocate that mandatory genetic counseling should gate-keep access to direct-to-consumer genetic testing, if the testing process has the potential to cause psychological distress, then companies have a responsibility to provide support and should not rely on traditional healthcare systems to pick up the pieces.
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| 2. |
- Middleton, Anna, et al.
(author)
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'Your DNA, Your Say': global survey gathering attitudes toward genomics : design, delivery and methods
- 2018
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In: Personalized Medicine. - : Future Medicine Ltd. - 1741-0541 .- 1744-828X. ; 15:4, s. 311-318
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Journal article (peer-reviewed)abstract
- Our international study, 'Your DNA, Your Say', uses film and an online cross-sectional survey to gather public attitudes toward the donation, access and sharing of DNA information. We describe the methodological approach used to create an engaging and bespoke survey, suitable for translation into many different languages. We address some of the particular challenges in designing a survey on the subject of genomics. In order to understand the significance of a genomic result, researchers and clinicians alike use external databases containing DNA and medical information from thousands of people. We ask how publics would like their 'anonymous' data to be used (or not to be used) and whether they are concerned by the potential risks of reidentification; the results will be used to inform policy.
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| 3. |
- Niemiec, Emilia, Dr, et al.
(author)
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Current ethical and legal issues in health-related direct-to-consumer genetic testing
- 2017
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In: Personalized Medicine. - : Future Medicine Ltd. - 1741-0541 .- 1744-828X. ; 14:5, s. 433-445
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Research review (peer-reviewed)abstract
- A variety of health-related genetic testing is currently advertized directly to consumers. This article provides a timely overview of direct-to-consumer genetic testing (DTC GT) and salient ethical issues, as well as an analysis of the impact of the recently adopted regulation on in vitro diagnostic medical devices on DTC GT. DTC GT companies currently employ new testing approaches, report on a wide spectrum of conditions and target new groups of consumers. Such activities raise ethical issues including the questionable analytic and clinical validity of tests, the adequacy of informed consent, potentially misleading advertizing, testing in children, research uses and commercialization of genomic data. The recently adopted regulation on in vitro diagnostic medical devices may limit the offers of predisposition DTC GT in the EU market.
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| 4. |
- Ormond, Kelly E., et al.
(author)
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The clinical application of gene editing : ethical and social issues
- 2019
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In: Personalized Medicine. - : Future Medicine Ltd. - 1741-0541 .- 1744-828X. ; 16:4, s. 337-350
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Journal article (peer-reviewed)abstract
- Gene-editing techniques have progressed rapidly in the past 5years. There are already ongoing human somatic gene-editing clinical trials for multiple diseases. And there has been one purported scenario of human germline gene editing in late 2018. In this paper, we will review the current state of the technology, discuss the ethical and social issues that surround the various forms of gene editing, as well as review emerging stakeholder data from professionals, the general public' and individuals and families dealing with genetic diseases potentially treatable by gene editing.
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| 5. |
- Tuzmen, S, et al.
(author)
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Characterization of farnesyl diphosphate farnesyl transferase 1 (FDFT1) expression in cancer
- 2019
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In: Personalized medicine. - : Future Medicine Ltd. - 1744-828X .- 1741-0541. ; 16:1, s. 51-65
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Journal article (peer-reviewed)abstract
- Aim: To help characterize the FDFT1 gene and protein expression in cancer. Cholesterol represents an important structural component of lipid rafts. These specializations can be involved in pathways stimulating cell growth, survival and other processes active in cancer. This cellular compartment can be expanded by acquisition of cholesterol from the circulation or by its synthesis in a metabolic pathway regulated by the FDFT1 enzyme. Given the critical role this might play in carcinogenesis and in the behavior of cancers, we have examined the level of this enzyme in various types of human cancer. Our demonstration of elevated levels of FDFT1 mRNA and protein in some tumors relative to surrounding normal tissue identifies this as a possible biomarker for disease development and progression, and as a potential new target for the treatment of cancer.
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