Jeg er helt enig i dine pointer og kan sagtens følge din kritik. Vi står i en situation, hvor staten har enorm kontrol over vores data. For eksempel kan man ikke få slettet noget fra sin sygejournal. Der er ikke mange direkte handlemuligheder. Mange tidsskrifter har dog etiske retningslinjer, som de er forpligtet til at følge. Det eneste vi reelt kan gøre, er at skabe synlighed, så sagen ikke kan ignoreres. Ved ikke hvad man ellers kan gøre? Vi er jo ikke det med oprørske folk der findes; vi mangler til tider nogle gule veste som i Frankrig
iPSYCHuetisk
joined 4 days ago
Det er så forkert, som det overhovedet kan være. At lave korrelationsstudier mellem genetik og psykiatriske diagnoser er dybt problematisk, især fordi mange af de diagnoser i forvejen befinder sig i en gråzone og ikke er entydigt definerede (det er dårlig videnskab). Der er en reel og alvorlig risiko for, at sådanne studier fører til stigmatisering allerede fra fødslen. I hænderne på et autoritært styre kan resultaterne misbruges til at træffe vidtgående beslutninger om menneskers liv alene på baggrund af deres genetiske profil fx.
Her er et mailudkast:
Dear (journal navn)
I am contacting you regarding research articles in your journal that used data from the Danish iPSYCH project, including my genetic and health information, without my informed consent. Neither I nor my parents were asked for consent, and I was only notified after publication. This constitutes a violation of international ethical standards (Declaration of Helsinki, CIOMS), the EU General Data Protection Regulation (Articles 6, 7, 9, and 17), and COPE guidelines.
I formally request the immediate removal of my personal data and biological material from all related studies and datasets. I also request confirmation of whether your journal verified informed consent for all participants, and a formal ethics investigation if consent cannot be confirmed.
Please confirm receipt of this request and outline the next steps your journal will take in response. Thank you for your attention.
Best regards
Super tak for info!
Liste af artikler fra https://ipsych.dk/en/research/publications/previous-publications : (de har udgivet 1k+ studier, men har taget fra 2021 og 2022 her hvis nogen vil hjælpe med at kuratere en liste vil jeg redigere og tilføje):
American Journal of Human Genetics - ajhg@ajhg.net
Albiñana C, Grove J, McGrath JJ, Agerbo E, Wray NR, Bulik CM, et al. Leveraging both individual-level genetic data and GWAS summary statistics increases polygenic prediction. American Journal of Human Genetics. 2021;108(6):1001-11.
Pedersen EM, Agerbo E, Plana-Ripoll O, Grove J, Dreier JW, Musliner KL, et al. Accounting for age of onset and family history improves power in genome-wide association studies. American Journal of Human Genetics. 2022;109(3):417-32.
Biological Psychiatry - biol.psych@sobp.org
Ni G, Zeng J, Revez JA, Wang Y, Zheng Z, Ge T, et al. A Comparison of Ten Polygenic Score Methods for Psychiatric Disorders Applied Across Multiple Cohorts. Biological Psychiatry. 2021;90(9):611-20.
Yang Z, Wu H, Lee PH, Tsetsos F, Davis LK, Yu D, et al. Investigating Shared Genetic Basis Across Tourette Syndrome and Comorbid Neurodevelopmental Disorders Along the Impulsivity-Compulsivity Spectrum. Biological Psychiatry. 2021.
Blokland GAM, Grove J, Chen CY, Cotsapas C, Tobet S, Handa R, et al. Sex-Dependent Shared and Nonshared Genetic Architecture Across Mood and Psychotic Disorders. Biological Psychiatry. 2022;91(1):102-17.
Maihofer AX, Choi KW, Coleman JRI, Daskalakis NP, Denckla CA, Ketema E, et al. Enhancing Discovery of Genetic Variants for Posttraumatic Stress Disorder Through Integration of Quantitative Phenotypes and Trauma Exposure Information. Biological Psychiatry. 2022;91(7):626-36.
Mullins N, Kang J, Campos AI, Coleman JRI, Edwards AC, Galfalvy H, et al. Dissecting the Shared Genetic Architecture of Suicide Attempt, Psychiatric Disorders, and Known Risk Factors. Biological Psychiatry. 2022;91(3):313-27.
Shorter JR, Meijsen J, Nudel R, Krebs M, Gådin J, Mikkelsen DH, et al. Infection Polygenic Factors Account for a Small Proportion of the Relationship Between Infections and Mental Disorders. Biological Psychiatry. 2022;92(4):283-90.
Brain, Behavior, and Immunity
Liu X, Nudel R, Thompson WK, Appadurai V, Schork AJ, Buil A, et al. Genetic factors underlying the bidirectional relationship between autoimmune and mental disorders - Findings from a Danish population-based study. Brain, Behavior, and Immunity. 2021;91:10-23.
Brain
Skotte L, Fadista J, Bybjerg-Grauholm J, Appadurai V, Hildebrand MS, Hansen TF, et al. Genome-wide association study of febrile seizures implicates fever response and neuronal excitability genes. Brain. 2022.
JAMA Psychiatry - jamapsych@jamanetwork.org
Agerbo E, Trabjerg BB, Børglum AD, Schork AJ, Vilhjálmsson BJ, Pedersen CB, et al. Risk of Early-Onset Depression Associated With Polygenic Liability, Parental Psychiatric History, and Socioeconomic Status. JAMA Psychiatry (Chicago, Ill). 2021.
Musliner KL, Agerbo E, Vilhjálmsson BJ, Albiñana C, Als TD, Østergaard SD, et al. Polygenic Liability and Recurrence of Depression in Patients With First-Onset Depression Treated in Hospital-Based Settings. JAMA Psychiatry (Chicago, Ill). 2021;78(7):792-5.
Calle Sanchez X, Helenius D, Bybjerg-Grauholm J, Pedersen C, Hougaard DM, Borglum AD, et al. Comparing Copy Number Variations in a Danish Case Cohort of Individuals With Psychiatric Disorders. JAMA Psychiatry (Chicago, Ill). 2022;79(1):59-69.
Molecular Psychiatry - MolecularPsychiatry@us.nature.com
Hess JL, Tylee DS, Mattheisen M, Schizophrenia Working Group of the Psychiatric Genomics C, Lundbeck Foundation Initiative for Integrative Psychiatric R, Borglum AD, et al. A polygenic resilience score moderates the genetic risk for schizophrenia. Molecular Psychiatry. 2021;26(3):800-15.
Deak JD, Zhou H, Galimberti M, Levey DF, Wendt FR, Sanchez-Roige S, et al. Genome-wide association study in individuals of European and African ancestry and multi-trait analysis of opioid use disorder identifies 19 independent genome-wide significant risk loci. Molecular Psychiatry. 2022.
Nature - nature@nature.com
Trubetskoy V, Pardiñas AF, Qi T, Panagiotaropoulou G, Awasthi S, Bigdeli TB, et al. Mapping genomic loci implicates genes and synaptic biology in schizophrenia. Nature. 2022;604(7906):502-8.
Nature Communications - naturecommunications@nature.com
Demontis D, Walters RK, Rajagopal VM, Waldman ID, Grove J, Als TD, et al. Author Correction: Risk variants and polygenic architecture of disruptive behavior disorders in the context of attention-deficit/hyperactivity disorder. Nature Communications. 2021;12(1):1166.
Krebs MD, Themudo GE, Benros ME, Mors O, Børglum AD, Hougaard D, et al. Associations between patterns in comorbid diagnostic trajectories of individuals with schizophrenia and etiological factors. Nature Communications. 2021;12(1):6617.
Sun J, Wang Y, Folkersen L, Borné Y, Amlien I, Buil A, et al. Translating polygenic risk scores for clinical use by estimating the confidence bounds of risk prediction. Nature Communications. 2021;12(1):5276.
Verhoef E, Grove J, Shapland CY, Demontis D, Burgess S, Rai D, et al. Discordant associations of educational attainment with ASD and ADHD implicate a polygenic form of pleiotropy. Nature Communications. 2021;12(1):6534.
Nature Genetics - genetics@us.nature.com
Antaki D, Guevara J, Maihofer AX, Klein M, Gujral M, Grove J, et al. Publisher Correction: A phenotypic spectrum of autism is attributable to the combined effects of rare variants, polygenic risk and sex. Nature Genetics. 2022;54(8):1259.
Fu JM, Satterstrom FK, Peng M, Brand H, Collins RL, Dong S, et al. Rare coding variation provides insight into the genetic architecture and phenotypic context of autism. Nature Genetics. 2022.
Grotzinger AD, Mallard TT, Akingbuwa WA, Ip HF, Adams MJ, Lewis CM, et al. Genetic architecture of 11 major psychiatric disorders at biobehavioral, functional genomic and molecular genetic levels of analysis. Nature Genetics. 2022;54(5):548-59.
Science Advances - ScienceAdvancesEditorial@aaas.org
Allesøe RL, Nudel R, Thompson WK, Wang Y, Nordentoft M, Børglum AD, et al. Deep learning-based integration of genetics with registry data for stratification of schizophrenia and depression. Sci Adv. 2022;8(26):eabi7293.
The American Journal of Psychiatry - ajp@psych.org
Brikell I, Wimberley T, Albiñana C, Pedersen EM, Vilhjálmsson BJ, Agerbo E, et al. Genetic, Clinical, and Sociodemographic Factors Associated With Stimulant Treatment Outcomes in ADHD. American Journal of Psychiatry. 2021:appiajp202020121686.
Tak for den varme velkomst!
Jeg har tænkt mig at poste op iPSYCH (den uetiske forskning) sagen og hvad man kan gøre personligt.
Sig endelig til hvis min post bryder nogen regler, så jeg kan tilpasse den :)
Søgte efter Reddit alternativ og kender en der bruger det
Jeg sætter pris på din kommentar og kan være ret enig med dig. 140.000 mennesker har fået brugt deres DNA og personlige data uden samtykke. Jeg ville ønske, det skabte større røre. Jeg har en fornemmelse af, at folk ikke er informerede, eller måske er vi bare i en tid, hvor privatliv ikke har værdi.
En svaghed ved iPSYCH er, at de laver konklusioner ud fra observerede sammenhænge. Eksempelvis finder de en sammenhæng mellem lavt neonatal D-vitamin og øget risiko for skizofreni senere i livet. Men denne sammenhæng betyder ikke nødvendigvis, at manglen på D-vitamin i sig selv er årsagen til sygdommen. Det kan snarere handle om en fælles bagvedliggende faktor, f.eks. at sårbare og ressourcesvage familier ofte både har lavere mulighed for at sikre tilstrækkeligt pleje til deres nyfødte og samtidig en højere forekomst af psykiske lidelser. Derfor bør løsningen ikke alene være at supplere med D-vitamin, men snarere at adressere de sociale og økonomiske vilkår, der ligger til grund for denne sammenhæng.
Min pointe er: at de både laver forskning på uetisk indsamlet data men også laver korrelations forskning der på kanten til dårlig praksis.