Disease: Von Willebrand Disease (VWD) type 1

Patient(s): 13 yo, female and 14 yo, female, both Italian

Variant: VWF NM_000552.5: c.820A>C p. (Thr274Pro)

Dominant negative effect

Heterozygous carrier

Variant located in the D1 domain on VWF

Phenotypes:

heterozygous carriers have no bleeding history

reduced VWF levels compatible with diagnosis of VWD type 1

increased FVIII:C/VWF:Ag ratio, suggests reduced VWF synthesis/secretion as possible phathophysiological mechanism

Normal VWFpp/VWF:Ag ratio

Modest alteration of multimeric pattern in plasma and platelet multimers

plasma VWF showed slight increase of LMWM and decrease of IMWM and HMWM

Platelet VWF showed quantitative decrease of IMWM, HMWM, and UL multimers

In silico analysis:

SIFT, ALIGN, GVD Polyphen 2.0, SNP&GO, Mutation Taster, Pmut all suggest damaging consequences.

PROVEAN and Effect suggest neutral effect

according to ACMG guidelines this variant was classified as pathogenic

• for: food supply chain transparency - unecloseable carrier

What is striking about this request and EFF's argument against is how this goes against "common carrier" principles—although this phrase isn't specifically used. In the net neutrality wars, "common carrier" status means that the network pipes are dumb...they neither understand nor promote/demote particular kinds of traffic. Their utility is in passing bits from one location another in the service of broader connectivity. "Common carrier" is a useful phrase for net neutrality in the United States...as a phrase, it may not translate well to other languages.

Compare social media with the newspaper business from this perspective.

People joined social media not knowing the end effects, but now don't have a choice of platform after-the-fact. Social platforms accelerate the disinformation using algorithms.

Because there is choice amongst newspapers, people can easily move and if they'd subscribed to a racist fringe newspaper, they could easily end their subscription and go somewhere else. This is patently not the case for any social media. There's a high hidden personal cost for connectivity that isn't taken into account. The government needs to regulate this and not the speech portion.

Social media should be considered a common carrier and considered as such. It was an easier and more logical process in the telephone, electricity and other areas to force this as the cost of implementation for them was magnitudes of order higher. The data formats and storage for social should be standardized (potentially even in three or more formats) and that should be the common carrier imposed. Would this properly skirt the First Amendment issues?

Cormier, Z. (n.d.). The Second-Generation COVID Vaccines Are Coming. Scientific American. Retrieved 11 February 2021, from https://www.scientificamerican.com/article/the-second-generation-covid-vaccines-are-coming/

Cassella, C. (n.d.). Some “Healthy” Kids Can Carry as Much COVID-19 Virus as Severely Sick Adults. ScienceAlert. Retrieved August 27, 2020, from https://www.sciencealert.com/some-healthy-kids-with-covid-19-might-carry-enough-virus-to-hospitalise-an-adult

Coronavirus: Can kids spread COVID-19? Your questions answered. (n.d.). Indystar. Retrieved August 2, 2020, from https://www.usatoday.com/story/news/health/2020/07/17/coronavirus-can-kids-spread-covid-19-spreadquestions-answered/5450062002/

Shental, N., Levy, S., Skorniakov, S., Wuvshet, V., Shemer-Avni, Y., Porgador, A., & Hertz, T. (2020). Efficient high throughput SARS-CoV-2 testing to detect asymptomatic carriers. MedRxiv, 2020.04.14.20064618. https://doi.org/10.1101/2020.04.14.20064618