Informed consent & Documentation
There was no informed consent given to the participants to be part of the dataset. It is evidence that Kirkegard and Bjerrekaer’s did not meet the 6 subsections under Part B of informed consent: (1 & 2) elements of informed consent, (3 & 4) of IRB approval of consent procedure, (5) not to preempt federal and local laws, and (6) not to limit physicians’ care.
As the researchers did not find it necessary to inform OKCupid users, no consent was obtained, nor the use of an IRB. By suggesting that the “data is already public” (Kirkegard & Bjerrekaer, 2016), it relinquishes accountability; of the harm that can arise, and the ethical issues regarding their dataset. Zimmer (2016) makes it clear that public
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This would, in effect, hide the identity of the subject, so that they are not discovered by colleagues or friends. In addition, the scrappers could be limited in what is collected to prevent personally identifiable information (PII) to be found by those who request the data set.
Fairness
Kirkegard and Bjerrekaer collected data from people who answered at least 1,000 questions on OKCupid. The researchers’ selection of subjects at first glance appears unbiased in terms of how they culled information. However, on close inspection of age there were participants under the age of 18. Schultze & Mason (2012) states that children are a vulnerable population that should be protected from exploitative research. It is incompressible to have participants under 18 to be involved in this data set. The reason is that some of the OKCupid’s questions could be very personal, and parents and guardians my want to protect their children from the exploitations and consequences of their children’s preferences from being abused.
To remedy this situation, we must go back to getting consent. However, children should not be involved in this study. The better solution here would be to limit the scrapper bots from downloading underage profiles. That way we the vulnerable population are protected.
Research involvement intended deception
Deception was used to collect data. Aside from taking the rights of the
Sites that include drop-down menus that only permit users to enter birth years can provide users with the chance to make themselves older than 13 and therefore cannot be considered a neutral age-screening mechanism. Another method of ensuring the design of a website is age-neutral is by avoiding encouraging minors to falsify their age information, for instance, by stating that users must ask parental consent before participating or merely saying that users under 13 are not allowed to participate. Upon verifying that a user is under13 and have collected personal information from them, one can obtain their parent information to provide a direct notice and also implement parental consent requirements. Sites that do not want to apply the act’s protections for users under 13 can configure their data system to delete personal data for users under 13 automatically. Alternatively, the sites can remove their data and direct them to websites or material that does not involve the collection of personal information (LSE,
Hook. Background. Amy Webb discusses the security of online data by focusing on her friends and their child “Kate” as well as her decisions with her husband about what to post and what not to post about their own daughter. In the article “We Post Nothing about Our Daughter Online” by Amy Webb, the author cleverly uses labeling, pathos, and rhetorical analogies to argue her opinion that parents should not post personal information about their kids on social media.
The second discrepancy with Fleming’s article is the role that schools, especially universities, should play in protecting students’ privacy online. The fact that Fleming lists multiple examples of minors being hurt by poor social networking decisions has nothing to do with the topic suggested in her title “Youthful Indiscretions: Should Colleges Protect Social Network Users from Themselves and Others?” This is a red herring fallacy that appeals to the reader’s emotions yet has nothing to do with the writer’s original topic. Protecting minors online is a separate issue in itself in which parents and likely schools should be involved. On the contrary, for college students, the FERPA policies under which Fleming says a university employee must adhere to are meant to protect
Time Newspaper has learnt that it's not surprising that Internet companies have electronic dossiers that contain personal information for individuals who subscribe to the websites. Generally, these companies have obtained the information from people based on individual's visit to the website, sent and received emails, tagged photos, and searches people carry out. However, the extent of personal information known by these Internet companies has remained largely unknown as well who they provide and/or sell this information to. However, Internet companies continue to gather lots of personal information from different people who focus on carrying out online activities on a daily basis. Currently, it's estimated that these firms gather personal information from nearly 500 million users but are hesitant to provide this information to the other firms or individuals. As their unwillingness to share has attracted significant congressional inquiry, things could finally change in California following the introduction of a bill that may force companies to disclose the kind of personal information they have gathered and how this information is being used.
Failure to protect subject’s personal information, is an example of not complying the above two principles in the research industry. Researchers are in a position of dealing with a great deal of very personal information that their participants have agreed to disclose. Depending on the type of study, personal identifiers such as names, birthdates, places of residence etc. may or may not have to be collected. In situations where these data are collected, researchers may take several steps to ensure the confidentiality of their participants’
Boyd and Crawford showcased that Big Data can pull information from people and promise them an anonymous study yet make it easy to identify the participants. This can make those people self-conscious and push them into things that they weren’t expecting, like in the case of that specific
Some researchers may invite parents participate in the research. However, in this case, sometimes children’s response may not be their real thoughts because they may be affected by adults. Researchers may face dilemmas whether to communicate children’s responses to their parents if the child participants told them not to. As a result, researchers need to maintain a shared power and build trust with parents and children. This can ensure both parents and children’s rights to express their willingness, their considerations, and their preferences.
INFORMED CONSENT : Valid consent is impossible. To date, foetal tissue transplants have been handled as any other organ transplants under the UAGA, thus requiring consent of next of kin. The mother cannot give morally legitimate consent, since she initiated the termination of the pregnancy. Elimination of consent, however, would further turn the unborn child into an object; it would be inconsistent with the fact that, biologically, the developing foetus does not interpret the woman’s tissue. The UAGA and the NIH Panel both fail to discern the conflict between normal organ transplants and the function of foetal tissue. In the instance of foetal tissue, the mother is presumed to be the one who gives consent to the use of the tissue for the transplant (or for some other kind of experimentation). Granting to the normal understanding of proxy consent, her role assumes that she is working in the best interest of the unborn child. However, she is also the one who has initiated the final termination of pregnancy. Just quoting the part of the act dealing with informed consent stated in the NewZealand legislation
An informed consent is the sovereign act by the patient or a research subject to authorize a healthcare professional to perform a medical procedure. It means that patients must be briefed on all the goals of the procedure, the methods to be used by the physician and all the risks that they might be subjected to while undergoing therapies/treatments. De Bord (2014), defines informed consent as “Informed consent is the process by which the treating health care provider discloses appropriate information to a competent patient so that the patient may make a voluntary choice to accept or refuse treatment” (as cited in Appelbaum, 2007). In this paper, I will argue that Jay Katz’s claim for the lack of genuine informed consent in healthcare field is firm by demonstrating and buttressing his claim. I will also pinpoint how Jay Katz’s argument is consistent with the medical professionals’ code of ethics
This paper attempted to reveal the dilemmas of Kirkegard and Bjerrekaer’s (2016) data set. In addition, to the use of public information. While information is public for everyone to access, the consent of participants is vital in addressing the four main issues of (1) human subjections’ right to privacy, (2) informed consent, (3) confidentiality, and (4) the reduction of harm.
This paper is a representation of two separate healthcare professions; a paramedic (Roscoe) and a registered nurse’s (Gale) perspective of the ethics of informed consent. Informed consent is a familiar and ethically important component of healthcare, grounded by principles and values that provide and maintain professional standards. The following will discuss and analyse the similarities and differences between the two professionals from the AV resource. Present international and national frameworks that influence decision making as well as the individual impact that the Code of Ethics provides in moral dilemmas will be examined. Contrasts of legalities versus ethics will also be explored in regards to vulnerable patients. Furthermore the
Fundamental to healthcare shared decision-making is the doctrine of informed consent. This shared decision-making is one of the most advocated methodologies in the healthcare treatment decision. Shared decision-making is a method in which the doctor communicates to his patient all the sufficient risk and benefit information on all types of medical treatments and alternative medical treatments. The patient then shares with his doctor all his personal information that might make a particular medical treatment (or a side-effect from it) more (or less) bearable than other medical treatments. Then, the doctor and his patient in tandem use all the information to arrive at a joint decision on the medical treatment. In order to be actively involved in their healthcare treatment decisions, patients must receive sufficient information from their doctors. In this particular role, doctors play the part of teachers or educators for their patients.
What is ethics? Merriam-webster dictionary defines ethics as: the discipline dealing with what is good and bad and with moral duty and obligation. Ethics and beliefs are ubiquitous throughout the modern world and always arise in numerous topics, issues, and arguments. When it comes to any research processes, ethics is something that must be considered in order to benefit both the results and the people involved. When ethical issues in medical research arise, the thought of the patient is paramount; ensuring that the patient knows exactly what is taking place through informed consent, that they have the respect to autonomy and confidentiality, that they are to remain unharmed, and the most vulnerable patients have the same treatment as all other
One of the articles’ headliner says first time users are under 17, but in reading the paragraph, the findings are since 1992 the age range has remained around 17, a big difference between saying “under” and age and “around” an age. While sensationalizing all the propaganda, this pertinent information is buried and the actual focus of the article becomes lost.
I agree with the decision that IBR made with regards to waiving the signed consent form since minors cannot give consent (Royse et al., 2016). One of the reasons why I agree with the decision that IBR made is because the risk is minimal. Another decision that the IBR could have made that would not have been appropriate for this research was requiring the written consent for from parents before the children participates in the research due to many parents failing to respond back about the consent form, especially for those children living in a single parent household. Meaning many minority children would be under represented in the study (Royse et al., 2016). In addition, the researcher should be sensitive to the culture of the children (Royse